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Fibromyalgia
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By (user no longer on site) OP
over a year ago
|
Hi kitty here!  *waves*
I've done a forum search and noticed a fair amount of threads on fibro but they're all really old.
Anyone still around that has a fibro diagnosis?
It would be good to chat to others in the same boat. Any words of wisdom on how you manage work with fibro?
Ta! |
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By *ad NannaWoman
over a year ago
East London |
I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
|
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By *ad NannaWoman
over a year ago
East London |
"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
"
I no longer work because of osteoarthritis and other health issues along with the fibro.
I stood it as long as possible but after a couple of operations it got too much and I found I needed more rest days than was possible. |
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By (user no longer on site)
over a year ago
|
Yeah I’ve had it years yes lose strength but I keep battling through a energy drink helps I get terrible calf pain one thing what has been good I use a cpap machine at night and use Hearingaids to and a sauna and hot tub helps |
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Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse. |
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By *ad NannaWoman
over a year ago
East London |
"
Yeah I’ve had it years yes lose strength but I keep battling through a energy drink helps I get terrible calf pain one thing what has been good I use a cpap machine at night and use Hearingaids to and a sauna and hot tub helps "
I live on Cherry Lucozade. It's not good for me I know but it's one of the few drinks that doesn't upset my stomach.
I have some days where I wake up clear-headed and with energy, then others where I'm like a zombie.
I have very little stamina now too. |
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By *ad NannaWoman
over a year ago
East London |
"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse. "
Sex on a bed is a good exercise for me as I have something squashy to rest on and my weight is not on my feet.
I feel better physically and mentally after sex. |
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Fibromyalgia is not usually a stand alone. Tends to be trauma led condition resulting from serious other health conditions. So separating its impact and medication to take can be a real struggle. You find yourself saying the same thing over and over to different parts of the NHS. |
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By (user no longer on site) OP
over a year ago
|
"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
"
Thanks! I've had a change in circumstances and thought little and often would be better but maybe I need to do more then rest up the next day. |
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By (user no longer on site) OP
over a year ago
|
"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
"
I relate to this! I had a family day out last week, we were walking for most of the day ( with regular bench breaks) I was completely wiped out when I got home and the next day. I felt bloody miserable. |
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By *ad NannaWoman
over a year ago
East London |
"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
Thanks! I've had a change in circumstances and thought little and often would be better but maybe I need to do more then rest up the next day. "
I try to have a totally free day after a busy day or evening. The exhaustion is as bad as the pain, if not worse, sometimes.
I had to stop doing admin for my family as I kept making stupid mistakes. |
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By (user no longer on site) OP
over a year ago
|
"
Yeah I’ve had it years yes lose strength but I keep battling through a energy drink helps I get terrible calf pain one thing what has been good I use a cpap machine at night and use Hearingaids to and a sauna and hot tub helps "
Don't think I'd do very well on energy drinks but any excuse to get down to chameleons for a sauna and jacuzzi  |
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By *ad NannaWoman
over a year ago
East London |
"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
I relate to this! I had a family day out last week, we were walking for most of the day ( with regular bench breaks) I was completely wiped out when I got home and the next day. I felt bloody miserable. "
I try to avoid days out that includes a lot of walking. A little walk most days is good for me though. I found after each operation I had I lost stamina. I thought it might be the anaesthetic. |
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"Hi kitty here! *waves*
I've done a forum search and noticed a fair amount of threads on fibro but they're all really old.
Anyone still around that has a fibro diagnosis?
It would be good to chat to others in the same boat. Any words of wisdom on how you manage work with fibro?
Ta!"
Not diagnosed but was diagnosed with arthritis by a rumatolagis. Then I hurt a wrist and was told no signs of arthritis in my hands.
Googled from there next plan is to try and get a it diagnosed.
On the up it's more psychological then arthritis but the fatigue and stomach problems don't help but link it together. |
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|
By (user no longer on site) OP
over a year ago
|
"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse. "
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny  |
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By (user no longer on site) OP
over a year ago
|
"Fibromyalgia is not usually a stand alone. Tends to be trauma led condition resulting from serious other health conditions. So separating its impact and medication to take can be a real struggle. You find yourself saying the same thing over and over to different parts of the NHS."
I know the cause could probably give you the dates when this all started. I'm one of the 45% of people with fibro who have ADHD too. I've also been around in circles trying to explain what's going on to what feels like every professional in the NHS |
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"
Yeah I’ve had it years yes lose strength but I keep battling through a energy drink helps I get terrible calf pain one thing what has been good I use a cpap machine at night and use Hearingaids to and a sauna and hot tub helps
I live on Cherry Lucozade. It's not good for me I know but it's one of the few drinks that doesn't upset my stomach.
I have some days where I wake up clear-headed and with energy, then others where I'm like a zombie.
I have very little stamina now too."
I find a weak brandy and full fat cola helps both relax is my and helps my stomach.
But also CBD oil and mindfulness.
I'm 55 and allready working less still 60 hours but less physical.
|
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By *ad NannaWoman
over a year ago
East London |
"Fibromyalgia is not usually a stand alone. Tends to be trauma led condition resulting from serious other health conditions. So separating its impact and medication to take can be a real struggle. You find yourself saying the same thing over and over to different parts of the NHS.
I know the cause could probably give you the dates when this all started. I'm one of the 45% of people with fibro who have ADHD too. I've also been around in circles trying to explain what's going on to what feels like every professional in the NHS "
My rheumatologist treated me for it. I take Pregabilin which is a life saver. |
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"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
Thanks! I've had a change in circumstances and thought little and often would be better but maybe I need to do more then rest up the next day.
I try to have a totally free day after a busy day or evening. The exhaustion is as bad as the pain, if not worse, sometimes.
I had to stop doing admin for my family as I kept making stupid mistakes. "
Oh yes brain fog and as I guy I could not multi task to start with.
|
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By (user no longer on site) OP
over a year ago
|
"Loss of power and sudden pain is very annoying. Hate the cold and breeze. Fuck it and don't let it win when being intimate. "
What happens when you feel a cold breeze?
|
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"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny "
It depends on the level of activity. I usually double dose CBD the day before, during and after anything big. A day of pure rest, then a gentle day & I’m usually good to go. I do have a high pain threshold though. Which is very fortunate in a lot of ways.
It’s a double edged sword - in pain/exhausted isn’t conducive to horny…. But the sex helps the pain and (got me) increases the horny.
I would also advise keeping a diary so you can pinpoint your triggers be they food, drink or other. Once you know what they are you can avoid them. |
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By (user no longer on site) OP
over a year ago
|
"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
I relate to this! I had a family day out last week, we were walking for most of the day ( with regular bench breaks) I was completely wiped out when I got home and the next day. I felt bloody miserable.
I try to avoid days out that includes a lot of walking. A little walk most days is good for me though. I found after each operation I had I lost stamina. I thought it might be the anaesthetic. "
Oh that must have been disappointing! How frustrating for you. |
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"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse. "
I second most of this. I was told that while I had all the symptoms of fibromyalgia it was actually chronic fatigue so my advice may not entirely apply.
I worked intensely with a functional medic- cost a bomb- but have reversed most of the symptoms now. Worth every penny.
Key changes beyond above were
- remove all gluten, all sugar, all dairy and anything identified as high intolerance
- take huge amounts of supplements/ sorting a leaky gut/ rebalancing gut bacteria
- huge amount of restful exercise- for me that was yoga and meditation and walking
- journaling and facing emotional things I could/didn’t want to face. For that Check out the work of Alex Howard on chronic fatigue his podcasts are interesting. I wrote a book about this whole journey and that helped too.
Hope you are able to alleviate the symptoms hun x
|
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By (user no longer on site) OP
over a year ago
|
"Hi kitty here! *waves*
I've done a forum search and noticed a fair amount of threads on fibro but they're all really old.
Anyone still around that has a fibro diagnosis?
It would be good to chat to others in the same boat. Any words of wisdom on how you manage work with fibro?
Ta!
Not diagnosed but was diagnosed with arthritis by a rumatolagis. Then I hurt a wrist and was told no signs of arthritis in my hands.
Googled from there next plan is to try and get a it diagnosed.
On the up it's more psychological then arthritis but the fatigue and stomach problems don't help but link it together."
Have you discussed it with your GP? |
Reply privately, Reply in forum +quote
or View forums list | |
"Fibromyalgia is not usually a stand alone. Tends to be trauma led condition resulting from serious other health conditions. So separating its impact and medication to take can be a real struggle. You find yourself saying the same thing over and over to different parts of the NHS.
I know the cause could probably give you the dates when this all started. I'm one of the 45% of people with fibro who have ADHD too. I've also been around in circles trying to explain what's going on to what feels like every professional in the NHS
My rheumatologist treated me for it. I take Pregabilin which is a life saver. "
I did and all it done was give me a rash.
Sleep is tool I use but getting to sleep is a battle. |
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Oh and get a blood test for vitamin d. I was hugely deficient and have to take a supplement. I notice the difference within a day or 2 if I miss one. I can’t maintain it naturally at all.
I also take a b12 supplement- but I can’t remember why  . That does make a difference with horniness apparently. |
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By (user no longer on site) OP
over a year ago
|
"hubby has Fibromyalgia along with a lot of other health issues ..
Fibromyalgia has a vast amount of symptom's under its umbrella for those who have alot of the symptoms it horrendous "
I is indeed! One of those invisible illnesses at times, unless people are like me and have to hobble about when it's impacting my feet and legs. |
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"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny
It depends on the level of activity. I usually double dose CBD the day before, during and after anything big. A day of pure rest, then a gentle day & I’m usually good to go. I do have a high pain threshold though. Which is very fortunate in a lot of ways.
It’s a double edged sword - in pain/exhausted isn’t conducive to horny…. But the sex helps the pain and (got me) increases the horny.
I would also advise keeping a diary so you can pinpoint your triggers be they food, drink or other. Once you know what they are you can avoid them."
I would say a high pain threshold is a bad thing. I try not to get to the point of pain as by then it's to late. So work at work is light and I can manage my time so can get a long brake mid day if needed.
In the garden my Hoby I now brake jobs in to bits about an hour and a half then have a brake..before judging if I can go again or need to stop. |
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By (user no longer on site) OP
over a year ago
|
"I've been waiting for a diagnosis. Been told it will be 18 months before I get a referral "
To rheumatology? This is where it gets confusing, some GPS will diagnose it without a referral. Like the guy in thread mentioned it seems like rheumatology misdiagnose it too  |
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By (user no longer on site) OP
over a year ago
|
"
Yeah I’ve had it years yes lose strength but I keep battling through a energy drink helps I get terrible calf pain one thing what has been good I use a cpap machine at night and use Hearingaids to and a sauna and hot tub helps
I live on Cherry Lucozade. It's not good for me I know but it's one of the few drinks that doesn't upset my stomach.
I have some days where I wake up clear-headed and with energy, then others where I'm like a zombie.
I have very little stamina now too.
I find a weak brandy and full fat cola helps both relax is my and helps my stomach.
But also CBD oil and mindfulness.
I'm 55 and allready working less still 60 hours but less physical.
"
CBD seems to get mentioned quite a lot. |
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|
By (user no longer on site) OP
over a year ago
|
"Fibromyalgia is not usually a stand alone. Tends to be trauma led condition resulting from serious other health conditions. So separating its impact and medication to take can be a real struggle. You find yourself saying the same thing over and over to different parts of the NHS.
I know the cause could probably give you the dates when this all started. I'm one of the 45% of people with fibro who have ADHD too. I've also been around in circles trying to explain what's going on to what feels like every professional in the NHS
My rheumatologist treated me for it. I take Pregabilin which is a life saver. "
I've been on pregabalin 2 weeks now and it's helped a lot, still not anywhere near where I need to be though. I think they may need to increase the dose. |
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By (user no longer on site) OP
over a year ago
|
"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
Thanks! I've had a change in circumstances and thought little and often would be better but maybe I need to do more then rest up the next day.
I try to have a totally free day after a busy day or evening. The exhaustion is as bad as the pain, if not worse, sometimes.
I had to stop doing admin for my family as I kept making stupid mistakes.
Oh yes brain fog and as I guy I could not multi task to start with.
"
I was trying to workout what's worse the pain or fatigue but I think it's about the same. Fibro fog makes you feel stupid! Thought I had enough years of that being neurodivergent but nope add a bit of fibro fog in and it's even worse. |
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"Hi kitty here! *waves*
I've done a forum search and noticed a fair amount of threads on fibro but they're all really old.
Anyone still around that has a fibro diagnosis?
It would be good to chat to others in the same boat. Any words of wisdom on how you manage work with fibro?
Ta!
Not diagnosed but was diagnosed with arthritis by a rumatolagis. Then I hurt a wrist and was told no signs of arthritis in my hands.
Googled from there next plan is to try and get a it diagnosed.
On the up it's more psychological then arthritis but the fatigue and stomach problems don't help but link it together.
Have you discussed it with your GP? "
No am off to India Saterday.
When I etc back I'm going to a private GP.
1. Have a cyst on a testicle again so need that doing and NHS won't do it as they did say it could come back.
2. I Have rhinitis got know where with NHS had a camera up noise and tests but still have it.
3. I think a private might look at the fibromyalger diferantly.
4. Sleep I don't realy unless I take a mix of drugs my NHS GP will not prescribe all and then only 7 per month. When I went to a private psychologist he prescribed 28 days of both 10mg diazipan with 10mg stilnot/Zolpldem but over time my GP just won't help..
|
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"Oh and get a blood test for vitamin d. I was hugely deficient and have to take a supplement. I notice the difference within a day or 2 if I miss one. I can’t maintain it naturally at all.
I also take a b12 supplement- but I can’t remember why . That does make a difference with horniness apparently."
Can I ask is it the guy or girl with the problem. |
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"Oh and get a blood test for vitamin d. I was hugely deficient and have to take a supplement. I notice the difference within a day or 2 if I miss one. I can’t maintain it naturally at all.
I also take a b12 supplement- but I can’t remember why . That does make a difference with horniness apparently.
Can I ask is it the guy or girl with the problem."
Mrs. |
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"I've been waiting for a diagnosis. Been told it will be 18 months before I get a referral
To rheumatology? This is where it gets confusing, some GPS will diagnose it without a referral. Like the guy in thread mentioned it seems like rheumatology misdiagnose it too "
Yep that was me so I stopped exercise thinking it would make my joints worse. But now have a cross trainer 20 minutes max if I have had an easy day manly to try and keep waight down. And cardio fit. |
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By (user no longer on site) OP
over a year ago
|
"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny
It depends on the level of activity. I usually double dose CBD the day before, during and after anything big. A day of pure rest, then a gentle day & I’m usually good to go. I do have a high pain threshold though. Which is very fortunate in a lot of ways.
It’s a double edged sword - in pain/exhausted isn’t conducive to horny…. But the sex helps the pain and (got me) increases the horny.
I would also advise keeping a diary so you can pinpoint your triggers be they food, drink or other. Once you know what they are you can avoid them."
I'll think about giving the CBD a go. I already know my hormones make a big difference to my pain but probably need to think about other factors too. |
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|
By (user no longer on site) OP
over a year ago
|
"Hi kitty here! *waves*
I've done a forum search and noticed a fair amount of threads on fibro but they're all really old.
Anyone still around that has a fibro diagnosis?
It would be good to chat to others in the same boat. Any words of wisdom on how you manage work with fibro?
Ta!
Not diagnosed but was diagnosed with arthritis by a rumatolagis. Then I hurt a wrist and was told no signs of arthritis in my hands.
Googled from there next plan is to try and get a it diagnosed.
On the up it's more psychological then arthritis but the fatigue and stomach problems don't help but link it together.
Have you discussed it with your GP?
No am off to India Saterday.
When I etc back I'm going to a private GP.
1. Have a cyst on a testicle again so need that doing and NHS won't do it as they did say it could come back.
2. I Have rhinitis got know where with NHS had a camera up noise and tests but still have it.
3. I think a private might look at the fibromyalger diferantly.
4. Sleep I don't realy unless I take a mix of drugs my NHS GP will not prescribe all and then only 7 per month. When I went to a private psychologist he prescribed 28 days of both 10mg diazipan with 10mg stilnot/Zolpldem but over time my GP just won't help..
"
Oh wow enjoy India! Sounds like you've got a lot going on there! |
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"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny
It depends on the level of activity. I usually double dose CBD the day before, during and after anything big. A day of pure rest, then a gentle day & I’m usually good to go. I do have a high pain threshold though. Which is very fortunate in a lot of ways.
It’s a double edged sword - in pain/exhausted isn’t conducive to horny…. But the sex helps the pain and (got me) increases the horny.
I would also advise keeping a diary so you can pinpoint your triggers be they food, drink or other. Once you know what they are you can avoid them.
I'll think about giving the CBD a go. I already know my hormones make a big difference to my pain but probably need to think about other factors too. "
CBD I use is vitality oralspray 1200mg
Do you smoke |
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By (user no longer on site) OP
over a year ago
|
"Oh and get a blood test for vitamin d. I was hugely deficient and have to take a supplement. I notice the difference within a day or 2 if I miss one. I can’t maintain it naturally at all.
I also take a b12 supplement- but I can’t remember why . That does make a difference with horniness apparently."
I also have a vit D deficiency and take supplements but my levels weren't too low luckily. |
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|
By (user no longer on site) OP
over a year ago
|
"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny
It depends on the level of activity. I usually double dose CBD the day before, during and after anything big. A day of pure rest, then a gentle day & I’m usually good to go. I do have a high pain threshold though. Which is very fortunate in a lot of ways.
It’s a double edged sword - in pain/exhausted isn’t conducive to horny…. But the sex helps the pain and (got me) increases the horny.
I would also advise keeping a diary so you can pinpoint your triggers be they food, drink or other. Once you know what they are you can avoid them.
I'll think about giving the CBD a go. I already know my hormones make a big difference to my pain but probably need to think about other factors too.
CBD I use is vitality oralspray 1200mg
Do you smoke "
When I'm not going through my weekly battle to try to quit yes. |
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"Hi kitty here! *waves*
I've done a forum search and noticed a fair amount of threads on fibro but they're all really old.
Anyone still around that has a fibro diagnosis?
It would be good to chat to others in the same boat. Any words of wisdom on how you manage work with fibro?
Ta!
Not diagnosed but was diagnosed with arthritis by a rumatolagis. Then I hurt a wrist and was told no signs of arthritis in my hands.
Googled from there next plan is to try and get a it diagnosed.
On the up it's more psychological then arthritis but the fatigue and stomach problems don't help but link it together.
Have you discussed it with your GP?
No am off to India Saterday.
When I etc back I'm going to a private GP.
1. Have a cyst on a testicle again so need that doing and NHS won't do it as they did say it could come back.
2. I Have rhinitis got know where with NHS had a camera up noise and tests but still have it.
3. I think a private might look at the fibromyalger diferantly.
4. Sleep I don't realy unless I take a mix of drugs my NHS GP will not prescribe all and then only 7 per month. When I went to a private psychologist he prescribed 28 days of both 10mg diazipan with 10mg stilnot/Zolpldem but over time my GP just won't help..
Oh wow enjoy India! Sounds like you've got a lot going on there!"
Yer part of going to India is to see a doctor normally about £30 and for that he will right almost any prescription you want and £50 will buy a years worth of the medicines I Want/need so it's cost effective it's also off record so dose not effect insurance. |
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"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny
It depends on the level of activity. I usually double dose CBD the day before, during and after anything big. A day of pure rest, then a gentle day & I’m usually good to go. I do have a high pain threshold though. Which is very fortunate in a lot of ways.
It’s a double edged sword - in pain/exhausted isn’t conducive to horny…. But the sex helps the pain and (got me) increases the horny.
I would also advise keeping a diary so you can pinpoint your triggers be they food, drink or other. Once you know what they are you can avoid them.
I'll think about giving the CBD a go. I already know my hormones make a big difference to my pain but probably need to think about other factors too.
CBD I use is vitality oralspray 1200mg
Do you smoke
When I'm not going through my weekly battle to try to quit yes."
Do I say try some in a roll up |
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or View forums list | |
"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny
It depends on the level of activity. I usually double dose CBD the day before, during and after anything big. A day of pure rest, then a gentle day & I’m usually good to go. I do have a high pain threshold though. Which is very fortunate in a lot of ways.
It’s a double edged sword - in pain/exhausted isn’t conducive to horny…. But the sex helps the pain and (got me) increases the horny.
I would also advise keeping a diary so you can pinpoint your triggers be they food, drink or other. Once you know what they are you can avoid them.
I'll think about giving the CBD a go. I already know my hormones make a big difference to my pain but probably need to think about other factors too.
CBD I use is vitality oralspray 1200mg
Do you smoke
When I'm not going through my weekly battle to try to quit yes."
If stress makes it worse don't stress about giving up. You should but life is a ballance.
So limit it away from a social thing. Make it a tool that can me thrown away when you want. |
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"Fibromyalgia is not usually a stand alone. Tends to be trauma led condition resulting from serious other health conditions. So separating its impact and medication to take can be a real struggle. You find yourself saying the same thing over and over to different parts of the NHS."
Completely agree with this. Physical and emotional trauma caused mine, I have chronic pain and chronic fatigue. Back injury started it, then a whole heap of grief.
Supplements are really good, if you can be tested for any deficiencies. I really need to get back on them ( B12 injections, Vit D, Magnesium and folate )
I've also done a couple of pain management courses, so taken parts of those away that help.
You really just have to be kind to yourself and know that you are not lazy, if you need to rest.
I'm signed off, so don't work. But your employers should help you to make things easier. |
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|
By *ad NannaWoman
over a year ago
East London |
"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
Thanks! I've had a change in circumstances and thought little and often would be better but maybe I need to do more then rest up the next day.
I try to have a totally free day after a busy day or evening. The exhaustion is as bad as the pain, if not worse, sometimes.
I had to stop doing admin for my family as I kept making stupid mistakes.
Oh yes brain fog and as I guy I could not multi task to start with.
I was trying to workout what's worse the pain or fatigue but I think it's about the same. Fibro fog makes you feel stupid! Thought I had enough years of that being neurodivergent but nope add a bit of fibro fog in and it's even worse. "
It's annoying because I keep forgetting the words I want to use and the names of things.
I can't remember if I've taken my medication or fed my dogs most days. |
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"
Thanks! I've had a change in circumstances and thought little and often would be better but maybe I need to do more then rest up the next day. "
"Boom and bust" is more damaging in the long run, they teach you about pacing on the courses. |
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|
By (user no longer on site) OP
over a year ago
|
"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny
It depends on the level of activity. I usually double dose CBD the day before, during and after anything big. A day of pure rest, then a gentle day & I’m usually good to go. I do have a high pain threshold though. Which is very fortunate in a lot of ways.
It’s a double edged sword - in pain/exhausted isn’t conducive to horny…. But the sex helps the pain and (got me) increases the horny.
I would also advise keeping a diary so you can pinpoint your triggers be they food, drink or other. Once you know what they are you can avoid them.
I'll think about giving the CBD a go. I already know my hormones make a big difference to my pain but probably need to think about other factors too.
CBD I use is vitality oralspray 1200mg
Do you smoke
When I'm not going through my weekly battle to try to quit yes.
Do I say try some in a roll up "
That's not for me personally, I can see why people would go down that route. |
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|
By (user no longer on site) OP
over a year ago
|
"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
Sounds like good advice, how long does it take you to recover after a crash?
Maybe I need more sex in my life! I lost my libido quite a while ago which makes me feel miserable, I actually really enjoy being horny
It depends on the level of activity. I usually double dose CBD the day before, during and after anything big. A day of pure rest, then a gentle day & I’m usually good to go. I do have a high pain threshold though. Which is very fortunate in a lot of ways.
It’s a double edged sword - in pain/exhausted isn’t conducive to horny…. But the sex helps the pain and (got me) increases the horny.
I would also advise keeping a diary so you can pinpoint your triggers be they food, drink or other. Once you know what they are you can avoid them.
I'll think about giving the CBD a go. I already know my hormones make a big difference to my pain but probably need to think about other factors too.
CBD I use is vitality oralspray 1200mg
Do you smoke
When I'm not going through my weekly battle to try to quit yes.
If stress makes it worse don't stress about giving up. You should but life is a ballance.
So limit it away from a social thing. Make it a tool that can me thrown away when you want."
Unfortunately my impulsiveness due to my ADHD is unmanageable at the moment, if I think about it I'm doing it. |
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|
By (user no longer on site) OP
over a year ago
|
"Fibromyalgia is not usually a stand alone. Tends to be trauma led condition resulting from serious other health conditions. So separating its impact and medication to take can be a real struggle. You find yourself saying the same thing over and over to different parts of the NHS.
Completely agree with this. Physical and emotional trauma caused mine, I have chronic pain and chronic fatigue. Back injury started it, then a whole heap of grief.
Supplements are really good, if you can be tested for any deficiencies. I really need to get back on them ( B12 injections, Vit D, Magnesium and folate )
I've also done a couple of pain management courses, so taken parts of those away that help.
You really just have to be kind to yourself and know that you are not lazy, if you need to rest.
I'm signed off, so don't work. But your employers should help you to make things easier. "
A pain management course sounds good.
Vit D was the only deficiency I had out of those.
|
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|
By (user no longer on site) OP
over a year ago
|
"I started CBD patches before Christmas and I really think they are helping. Much easier than remembering to take drops and fit it inbetween meds and supplements."
I didn't realise they did patches too. |
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|
By (user no longer on site) OP
over a year ago
|
"
Thanks! I've had a change in circumstances and thought little and often would be better but maybe I need to do more then rest up the next day.
"Boom and bust" is more damaging in the long run, they teach you about pacing on the courses."
I can't say too much but it would mean adding 2 hours onto my day then having a day of rest afterwards. |
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|
By (user no longer on site) OP
over a year ago
|
"I don't really have any words of wisdom except rest when you need to.
I am currently thinking my sugar intake may affect the pain level.
I find the more stress I put on my body the worse the pain gets.
If I have an evening out I know I'm going to be in a lot of pain at bedtime and the next day so I plan my previous day and the day after to be as chilled as possible-if possible.
Thanks! I've had a change in circumstances and thought little and often would be better but maybe I need to do more then rest up the next day.
I try to have a totally free day after a busy day or evening. The exhaustion is as bad as the pain, if not worse, sometimes.
I had to stop doing admin for my family as I kept making stupid mistakes.
Oh yes brain fog and as I guy I could not multi task to start with.
I was trying to workout what's worse the pain or fatigue but I think it's about the same. Fibro fog makes you feel stupid! Thought I had enough years of that being neurodivergent but nope add a bit of fibro fog in and it's even worse.
It's annoying because I keep forgetting the words I want to use and the names of things.
I can't remember if I've taken my medication or fed my dogs most days."
Then people think it's comical, it really isn't. |
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"I started CBD patches before Christmas and I really think they are helping. Much easier than remembering to take drops and fit it inbetween meds and supplements.
I didn't realise they did patches too. "
Nor did I as posted I use a spray about 2 hours before bed |
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"Loss of power and sudden pain is very annoying. Hate the cold and breeze. Fuck it and don't let it win when being intimate. "
So that's not just me then the cold I even own M&S thermal tops to where underneath and bed sockes are a new thing for me god I'm getting old |
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"Loss of power and sudden pain is very annoying. Hate the cold and breeze. Fuck it and don't let it win when being intimate.
What happens when you feel a cold breeze?
"
The worst place to be, is on the fridge and freezer of a supermarket as cold air is circulating. It feels like a nail have been forced into my body with especially sharp knee and joint plan and a so tired.
In general I am hysensituve to the cold and where the breeze is from. |
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"Loss of power and sudden pain is very annoying. Hate the cold and breeze. Fuck it and don't let it win when being intimate.
What happens when you feel a cold breeze?
The worst place to be, is on the fridge and freezer of a supermarket as cold air is circulating. It feels like a nail have been forced into my body with especially sharp knee and joint plan and a so tired.
In general I am hysensituve to the cold and where the breeze is from."
Think covid has made that worse as well |
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|
By (user no longer on site) OP
over a year ago
|
"Loss of power and sudden pain is very annoying. Hate the cold and breeze. Fuck it and don't let it win when being intimate.
What happens when you feel a cold breeze?
The worst place to be, is on the fridge and freezer of a supermarket as cold air is circulating. It feels like a nail have been forced into my body with especially sharp knee and joint plan and a so tired.
In general I am hysensituve to the cold and where the breeze is from."
Makes sense as some people find their symptoms are worse when the weather changes. |
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"Oh and get a blood test for vitamin d. I was hugely deficient and have to take a supplement. I notice the difference within a day or 2 if I miss one. I can’t maintain it naturally at all.
I also take a b12 supplement- but I can’t remember why . That does make a difference with horniness apparently."
I was advised to take AZ tablets instead of just D. You can get them for a decent price and also on a 3 for 2 offer.
|
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Vit D is essential... It will help your gut and absorption issues for other vits and minerals.
Simply CBD topical patches... Either direct from them or on Amazon. I started with the 15mg, now on the 30. Change every 36hrs. I definitely feel so much better in myself. |
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"Oh and get a blood test for vitamin d. I was hugely deficient and have to take a supplement. I notice the difference within a day or 2 if I miss one. I can’t maintain it naturally at all.
I also take a b12 supplement- but I can’t remember why . That does make a difference with horniness apparently.
I was advised to take AZ tablets instead of just D. You can get them for a decent price and also on a 3 for 2 offer.
"
No, they're really not great quality and they don't have the right amounts. You're always better off taking good quality supps, separately. |
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|
By (user no longer on site) OP
over a year ago
|
Felt fed up as soon as I opened my eyes this morning, the fatigue hit me like a sledge hammer. Then the pain reminded me it's still very much there
I don't usually have a bath first thing as I prefer a shower but thought a soak may help. Nope still needed WD40 when I got out, these things come to test us ay  |
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By *eyeYCouple
over a year ago
Nr Leicester |
Y has Fibromyalgia and scoliosis, she battle's it with diet, avoiding intolerances, supplements, zero gluten, minimal dairy, alcohol, stress etc.
The mental, time, financial and emotional cost to help her have energy through a day is incredible and I even after these years sometimes struggle to understand it fully.
But I'm hugely proud of her strength in still being the woman she is!!
I hope this at least brings a smile to your face this morning.
Keep going x |
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By *oodmessMan
over a year ago
yumsville |
Thought I'd post this as it may be helpful given ill health leads to time off work. I don't usually listen to Mr Lewis but I've been thinking more about my checking the status of my state pension. This only applies to those over 45 as you are able to top up any gaps back to 2006 until April this year. After that it's out of time.
https://www.bbc.co.uk/sounds/play/p0f37yd2 |
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By *oodmessMan
over a year ago
yumsville |
"Has anyone been diagnosed with fibromyalgia and chronic fatigue syndrome? "
They were seen as two separate conditions though they have been grouped under one banner. I can't remember the difference to be honest, though I think one is manageable the other is less so (not at all). Why do you ask? |
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By (user no longer on site)
over a year ago
|
"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
I second most of this. I was told that while I had all the symptoms of fibromyalgia it was actually chronic fatigue so my advice may not entirely apply.
I worked intensely with a functional medic- cost a bomb- but have reversed most of the symptoms now. Worth every penny.
Key changes beyond above were
- remove all gluten, all sugar, all dairy and anything identified as high intolerance
- take huge amounts of supplements/ sorting a leaky gut/ rebalancing gut bacteria
- huge amount of restful exercise- for me that was yoga and meditation and walking
- journaling and facing emotional things I could/didn’t want to face. For that Check out the work of Alex Howard on chronic fatigue his podcasts are interesting. I wrote a book about this whole journey and that helped too.
Hope you are able to alleviate the symptoms hun x
"
This is great advice.
Fibromyalgia
Chronic fatigue syndrome CFS
Myalgic encephalomyelitis ME
Are all conditions used to describe all over body pain which a direct cause can't be found (e.g torn muscle, slipped disk etc etc) Extreme tiredness tends to be the biggest factor in CFS / ME.
A doctor friend explained that we don't know what causes this conditions, there's no blood tests, scans etc. The conditions came about to recognise a patient's pain and symptoms but ultimately the cause isn't known. Its depended on your symptoms and in what combination as to which of the above 3 terms is assigned usually after a battery of various tests looking for a range of things come back in the normal ranges.
There's a lot of ongoing research into this. More and more people are finding that poor diet and lifestyle choices, obesity, lack of exercise are often playing a significant role in at least contributing to these conditions. This includes mental health and stress factors aswell.
Some of the best case study results have come from making direct lifestyle changes whilst working on your the mental and emotional health like the poster I quoted above.
A very good friend suffered for years at work but since undertaking CBT therapy, diet control, daily supplements and victims alongside low impact health exercise yoga and meditation they have in there words become a new person. The results are astonishing to see.
KJ |
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By (user no longer on site) OP
over a year ago
|
"Has anyone been diagnosed with fibromyalgia and chronic fatigue syndrome?
They were seen as two separate conditions though they have been grouped under one banner. I can't remember the difference to be honest, though I think one is manageable the other is less so (not at all). Why do you ask?"
People with fibromyalgia report more pain based symptoms and people with ME/CFS tend to have more fatigue and less pain.
I know people can be diagnosed with both and was wondering how they manage. |
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|
By *oodmessMan
over a year ago
yumsville |
"Has anyone been diagnosed with fibromyalgia and chronic fatigue syndrome?
They were seen as two separate conditions though they have been grouped under one banner. I can't remember the difference to be honest, though I think one is manageable the other is less so (not at all). Why do you ask?
People with fibromyalgia report more pain based symptoms and people with ME/CFS tend to have more fatigue and less pain.
I know people can be diagnosed with both and was wondering how they manage. "
Pain is associated with CFS, as far as I can remember it's graded in mild, moderate and severe according to mobility and symptoms. I think you're right that fibro is more associated with pain than CFS, and is less associated with the fatigue side, though I think that's why they overlap and were more closely grouped.
Diet is a factor with both as essentially it's a key driver for healthy (gut) functioning and reducing inflammation. I am unsure about exercise with fibro, it's not promoted with cfs. How people manage on a day to day basis, I expect it's highly dependent |
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By *oodmessMan
over a year ago
yumsville |
"Things that have worked for me
CBD
Listening to your body
Planning tasks & rests
There may be something in the sugar theory. Too many carbs do me. I don’t do much in the way of sugar other than that.
Exercise helps but you need the balance.
I won’t stop though - I just accept the crash after a big day & rest up.
I recently discovered a “theory” evidence that orgasms produce CBDs in the body naturally. I have to say - I do feel better the more sex I have. I’m sticking with it.
Stress/unhappiness makes it a million times worse.
I second most of this. I was told that while I had all the symptoms of fibromyalgia it was actually chronic fatigue so my advice may not entirely apply.
I worked intensely with a functional medic- cost a bomb- but have reversed most of the symptoms now. Worth every penny.
Key changes beyond above were
- remove all gluten, all sugar, all dairy and anything identified as high intolerance
- take huge amounts of supplements/ sorting a leaky gut/ rebalancing gut bacteria
- huge amount of restful exercise- for me that was yoga and meditation and walking
- journaling and facing emotional things I could/didn’t want to face. For that Check out the work of Alex Howard on chronic fatigue his podcasts are interesting. I wrote a book about this whole journey and that helped too.
Hope you are able to alleviate the symptoms hun x
This is great advice.
Fibromyalgia
Chronic fatigue syndrome CFS
Myalgic encephalomyelitis ME
Are all conditions used to describe all over body pain which a direct cause can't be found (e.g torn muscle, slipped disk etc etc) Extreme tiredness tends to be the biggest factor in CFS / ME.
A doctor friend explained that we don't know what causes this conditions, there's no blood tests, scans etc. The conditions came about to recognise a patient's pain and symptoms but ultimately the cause isn't known. Its depended on your symptoms and in what combination as to which of the above 3 terms is assigned usually after a battery of various tests looking for a range of things come back in the normal ranges.
There's a lot of ongoing research into this. More and more people are finding that poor diet and lifestyle choices, obesity, lack of exercise are often playing a significant role in at least contributing to these conditions. This includes mental health and stress factors aswell.
Some of the best case study results have come from making direct lifestyle changes whilst working on your the mental and emotional health like the poster I quoted above.
A very good friend suffered for years at work but since undertaking CBT therapy, diet control, daily supplements and victims alongside low impact health exercise yoga and meditation they have in there words become a new person. The results are astonishing to see.
KJ"
You understand that all of the above are not causality. By that I mean, people will put on weight or become obese because they have pain, are unable to move, exercise, have the ability to cook well or lack decision making skills. People will have poor mental health due to isolation, lack of socialisation, difficulty finding work, lack of health care support. They are the long term effects of a condition not the trigger of it, but will help calm effects like with any other condition. There are many people who are obese, without fibro/cfs. There are many people with mental health conditions without fibro/cfs.
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