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Fibromyalgia
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By *oodmessMan
over a year ago
yumsville |
Look up nightshade foodstuffs.
A decent B-vit complex helps, as does B12. Magnesium is supposed to be good but there's many compounds (one variety though is sublingual that's easier on the stomach). A decent CO-Q10 is good though you have to take it long term. L-carnitine again is supposed to help. If you can aid cellular repair, function, oxygenation ever bit helps - its just being bothered with the pills. |
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A friend who suffers from this told me that she had found some treatment that was the most effective thing. It was some bed that she paid to lie on in a treatment place for an hour at a time.
She thought it was so helpful that she bought one for 3 grand  |
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Have a lot of experience with this for over 20 years.
Lots of medication around and unfortunately you are going to have to try them to see what will suit you. Anti inflammatory drugs like celecoxib or even Naproxen are now frowned upon as they cause heart damage. Co codamol 30/500 are common but cause constipation and are very habit forming. Tramadol basically knocks you out.
Stay as flexible as possible, vitamins are a good call, B12 and magnesium,also try Turmeric capsules which are helpful to some. Large dose 2000mu vitamin D also.
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By *oodmessMan
over a year ago
yumsville |
"A friend who suffers from this told me that she had found some treatment that was the most effective thing. It was some bed that she paid to lie on in a treatment place for an hour at a time.
She thought it was so helpful that she bought one for 3 grand "
There's lots of therapies.. all will have success and fail stories. You can pay out thousands though it's best to go incrementally to see what benefits you can see, and add or take away. Eg, full bloods from Dr (anything observable), pacing, lifestyle changes, dietary changes, supplementary boosts, cbt/occ therapy. Those are basic. Then you have things like lightening therapy (basically American cbt), perrin massage (basically massage), chiropractory, bariatric chambers, red light therapies, IgA tests, imaging scans, plasma therapies.. there are many and they reach far and wide. |
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Get referred for a pain management course, that can give you some useful tools.
Hydrotherapy is good.
As above... Vit D soft gels, with the co factors (K2 and magnesium - glycinate capsules are great for relaxing muscles) B12 and folic acid.
I take tramadol and paracetamol, it's the only thing that helps ease the pain. Tried lots of other meds, but it has the least side effects for me.
Also started on CBD patches, they've helped with the pain
I have a deep tissue massage once a month, more often would be good if you can afford it.
Most importantly, be kind to yourself! Resting is not being lazy. |
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I'm still on a waiting list to confirm a diagnosis.. so commenting to find help gp and physio have both said it's probably an issue for me but referrals to get it confirmed are taking forever. I've just had a 24 hour sleep period..  |
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"I'm still on a waiting list to confirm a diagnosis.. so commenting to find help gp and physio have both said it's probably an issue for me but referrals to get it confirmed are taking forever. I've just had a 24 hour sleep period.. "
I was diagnosed by the rheumatologist, chronic pain syndrome, same difference. |
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By (user no longer on site) OP
over a year ago
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My GP has diagnosed me, i'm not sure if she will refer me somewhere but at the moment she's dealing with a more urgent problem i have.
Thank you everyone x |
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I have had it for over 15 years, can't take strong pain meds as they knock me out and being a single parent isn't good. I have been in unbearable pain for the past few months I have resorted to using a wheelchair as the pain when walking is just too much. |
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By (user no longer on site) OP
over a year ago
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"I have had it for over 15 years, can't take strong pain meds as they knock me out and being a single parent isn't good. I have been in unbearable pain for the past few months I have resorted to using a wheelchair as the pain when walking is just too much."
I struggle to walk far, it's always painful. I'm thinging of buying one of those walkers with a seat on it. If i have something to hold on while walking it's easier. I just feel they are for people older than me |
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By *oodmessMan
over a year ago
yumsville |
"I have had it for over 15 years, can't take strong pain meds as they knock me out and being a single parent isn't good. I have been in unbearable pain for the past few months I have resorted to using a wheelchair as the pain when walking is just too much.
I struggle to walk far, it's always painful. I'm thinging of buying one of those walkers with a seat on it. If i have something to hold on while walking it's easier. I just feel they are for people older than me "
Have you thought about an electric bike or a foldable electric bike if you commute. E-scooters are hit and miss with legality though an e-bike could go at any speed. There were plenty on ebay as people bought them to get out more and now aren't using them as much |
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By (user no longer on site) OP
over a year ago
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"I have had it for over 15 years, can't take strong pain meds as they knock me out and being a single parent isn't good. I have been in unbearable pain for the past few months I have resorted to using a wheelchair as the pain when walking is just too much.
I struggle to walk far, it's always painful. I'm thinging of buying one of those walkers with a seat on it. If i have something to hold on while walking it's easier. I just feel they are for people older than me
Have you thought about an electric bike or a foldable electric bike if you commute. E-scooters are hit and miss with legality though an e-bike could go at any speed. There were plenty on ebay as people bought them to get out more and now aren't using them as much"
I can walk for a while although in pain, i don't commute, so a walker with a seat would be good  |
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By *adyJayneWoman
over a year ago
Burnleyish (She/They) |
"I have had it for over 15 years, can't take strong pain meds as they knock me out and being a single parent isn't good. I have been in unbearable pain for the past few months I have resorted to using a wheelchair as the pain when walking is just too much.
I struggle to walk far, it's always painful. I'm thinging of buying one of those walkers with a seat on it. If i have something to hold on while walking it's easier. I just feel they are for people older than me "
I wish I could help with the change of mindset but internalised ableism is a bitch to get over.
I have such a walker, a wheelchair, a Mobility scooter and a walking stick.
It took me ages to be comfortable with using Mobility aids (I have me/CFS so struggle with similar fatigue/chronic pain issues).
I've come to terms with 'if it means I can have some quality of life I'm going to use anything I damn well need to' but it took me quite some time to get there. |
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By (user no longer on site) OP
over a year ago
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"I have had it for over 15 years, can't take strong pain meds as they knock me out and being a single parent isn't good. I have been in unbearable pain for the past few months I have resorted to using a wheelchair as the pain when walking is just too much.
I struggle to walk far, it's always painful. I'm thinging of buying one of those walkers with a seat on it. If i have something to hold on while walking it's easier. I just feel they are for people older than me
I wish I could help with the change of mindset but internalised ableism is a bitch to get over.
I have such a walker, a wheelchair, a Mobility scooter and a walking stick.
It took me ages to be comfortable with using Mobility aids (I have me/CFS so struggle with similar fatigue/chronic pain issues).
I've come to terms with 'if it means I can have some quality of life I'm going to use anything I damn well need to' but it took me quite some time to get there. "
Yes it's my mind saying it's for old people, i need to get past that. If i'm walking a small distance i'm ok, if i push grandchilds pushchair i'm ok, or a shopping trolley but i still need to sit down fairly often.
I also can't tell how my other half is feeling about it too.
It's not helped that yesterday i fell over (didn't see the step down) and am very badly bruised on one side of my body, it's very painful and then tomorrow i'm having a minor op !! |
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By *adyJayneWoman
over a year ago
Burnleyish (She/They) |
"Yes it's my mind saying it's for old people, i need to get past that. If i'm walking a small distance i'm ok, if i push grandchilds pushchair i'm ok, or a shopping trolley but i still need to sit down fairly often.
I also can't tell how my other half is feeling about it too.
It's not helped that yesterday i fell over (didn't see the step down) and am very badly bruised on one side of my body, it's very painful and then tomorrow i'm having a minor op !!"
Be kind to yourself. It takes time to adjust your mindset, and it takes longer to adjust to the limitations of your 'new' body.
I can't compare to who I was, or what I could do any longer or I'd be perma-depressed.
My husband took longer to get used to things than I did. He didn't like me using my blue badge or my disabled bus pass without using a mobility aid... It's taken a year or so but he's over that now. |
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By (user no longer on site) OP
over a year ago
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"Yes it's my mind saying it's for old people, i need to get past that. If i'm walking a small distance i'm ok, if i push grandchilds pushchair i'm ok, or a shopping trolley but i still need to sit down fairly often.
I also can't tell how my other half is feeling about it too.
It's not helped that yesterday i fell over (didn't see the step down) and am very badly bruised on one side of my body, it's very painful and then tomorrow i'm having a minor op !!
Be kind to yourself. It takes time to adjust your mindset, and it takes longer to adjust to the limitations of your 'new' body.
I can't compare to who I was, or what I could do any longer or I'd be perma-depressed.
My husband took longer to get used to things than I did. He didn't like me using my blue badge or my disabled bus pass without using a mobility aid... It's taken a year or so but he's over that now. "
My hubby likes my blue badge cus it means i won't be as grumpy lol |
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By (user no longer on site)
over a year ago
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No words of wisdom op, I'm trying to figure it all out for myself! But I have chronic fatigue syndrome as well as fibromyalgia. Just came to wish you luck and hope you find something that works for you. |
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By (user no longer on site) OP
over a year ago
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"No words of wisdom op, I'm trying to figure it all out for myself! But I have chronic fatigue syndrome as well as fibromyalgia. Just came to wish you luck and hope you find something that works for you. "
Thank you, i hope you get all the advice and help needed too. Ut's a difficult time |
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I got diagnosed Oct last yr. I went to see the docs over my body bein in so much pain. He said it was the change n put me on HRT. 3 months later no better so went back the docs he prescribed medication duloxetine. I didn't really want to be on meds but Iv never known pain like it
I am looking for things to help me too. I changed from eating white bread n pasta n rice to wholegrain
I find hot showers help Wen I'm in pain n I believe cold ones can do the same too
Swimming is meant to be very good and yoga. Iv ywt to try as my depression kicked in n put me in a rut. I hope u find things that work for you x |
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"Is falling over part of the disease ? I fell again, snack on the floor in one of my fav pubs, feel so stupid ! Can't go there again "
I keep falling, it's mainly because my left side is weaker. Landed tit first into the corner of a cupboard a few weeks ago bruise has only just gone. Just have to remind myself to go slower than I think but it's crap when you're only 36 xx |
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By (user no longer on site) OP
over a year ago
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"I got diagnosed Oct last yr. I went to see the docs over my body bein in so much pain. He said it was the change n put me on HRT. 3 months later no better so went back the docs he prescribed medication duloxetine. I didn't really want to be on meds but Iv never known pain like it
I am looking for things to help me too. I changed from eating white bread n pasta n rice to wholegrain
I find hot showers help Wen I'm in pain n I believe cold ones can do the same too
Swimming is meant to be very good and yoga. Iv ywt to try as my depression kicked in n put me in a rut. I hope u find things that work for you x"
Thank you, i hope you improve x
I have a lovely walk in shower with a seat so tomorrow morning i will relax rather than rush
I've booked an appointment with the do that said i have fybro, it's not until june but thats ok. |
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By (user no longer on site) OP
over a year ago
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"Is falling over part of the disease ? I fell again, snack on the floor in one of my fav pubs, feel so stupid ! Can't go there again
I keep falling, it's mainly because my left side is weaker. Landed tit first into the corner of a cupboard a few weeks ago bruise has only just gone. Just have to remind myself to go slower than I think but it's crap when you're only 36 xx"
Oh no ! So sorry x
At least im ancient so its not so bad. |
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By (user no longer on site) OP
over a year ago
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"Is falling over part of the disease ? I fell again, snack on the floor in one of my fav pubs, feel so stupid ! Can't go there again "
Smack on the floor * |
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By (user no longer on site)
over a year ago
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So I have Hypermobile Ehlers Danlos Syndrome which is commonly misdiagnosed as Fibromyalgia. I find Pilates incredibly good for managing my pain and other symptoms including depression and Anxiety x I have an online teacher who specialises in bodies like ours x DM me if you want to know about her classes (you can do them all via zoom from your living room) |
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"I have had it for over 15 years, can't take strong pain meds as they knock me out and being a single parent isn't good. I have been in unbearable pain for the past few months I have resorted to using a wheelchair as the pain when walking is just too much.
I struggle to walk far, it's always painful. I'm thinging of buying one of those walkers with a seat on it. If i have something to hold on while walking it's easier. I just feel they are for people older than me "
It may sound silly but, I had to buy decent footwear. I cannot wear flats or heels, I need to spend more on shoes now. This helped with the foot and knee pains for me. |
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By (user no longer on site) OP
over a year ago
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"I have had it for over 15 years, can't take strong pain meds as they knock me out and being a single parent isn't good. I have been in unbearable pain for the past few months I have resorted to using a wheelchair as the pain when walking is just too much.
I struggle to walk far, it's always painful. I'm thinging of buying one of those walkers with a seat on it. If i have something to hold on while walking it's easier. I just feel they are for people older than me
It may sound silly but, I had to buy decent footwear. I cannot wear flats or heels, I need to spend more on shoes now. This helped with the foot and knee pains for me."
I wear decent trainers, they seem the best. |
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By (user no longer on site)
over a year ago
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"Is falling over part of the disease ? I fell again, snack on the floor in one of my fav pubs, feel so stupid ! Can't go there again "
Do you get a lot of stiffness in your legs? |
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By (user no longer on site)
over a year ago
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Fibro isn’t a diagnosis, it’s a symptom. Some Drs incorrectly use it when they cannot explain why it’s happening.
There are many things you can try and frequently, it is caused by food / environmental factors.
Things you can try:-
Low histamine diet (google histamine liberators / blockers and high histamine foods).
Celiac disease.
Vitamin deficiency (historic or current).
Food intolerance / allergy.
Hayfever.
Sleep. Make sure you get a full 7-8 hours sleep each night.
Things to make sure you try:-
Exercising. Start very small and build up gradually. Swimming is a great exercise as the cold water helps.
Rest in between.
If you feel the fibro has started - muscle pains / cramps / stiffness - do not exercise. Do not push yourself as you can cause other issues. Let your body rest and recover.
You should ask for a celiac test, genetic testing to rule out other possibilities of which fibro is a symptom.
Happy for you or anyone else suffering to dm me. |
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By (user no longer on site) OP
over a year ago
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"Is falling over part of the disease ? I fell again, snack on the floor in one of my fav pubs, feel so stupid ! Can't go there again
Do you get a lot of stiffness in your legs? "
Yes, hadn't realised until now though. |
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By (user no longer on site) OP
over a year ago
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"Fibro isn’t a diagnosis, it’s a symptom. Some Drs incorrectly use it when they cannot explain why it’s happening.
There are many things you can try and frequently, it is caused by food / environmental factors.
Things you can try:-
Low histamine diet (google histamine liberators / blockers and high histamine foods).
Celiac disease.
Vitamin deficiency (historic or current).
Food intolerance / allergy.
Hayfever.
Sleep. Make sure you get a full 7-8 hours sleep each night.
Things to make sure you try:-
Exercising. Start very small and build up gradually. Swimming is a great exercise as the cold water helps.
Rest in between.
If you feel the fibro has started - muscle pains / cramps / stiffness - do not exercise. Do not push yourself as you can cause other issues. Let your body rest and recover.
You should ask for a celiac test, genetic testing to rule out other possibilities of which fibro is a symptom.
Happy for you or anyone else suffering to dm me. "
Thank you, will DM you |
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By (user no longer on site)
over a year ago
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"Is falling over part of the disease ? I fell again, snack on the floor in one of my fav pubs, feel so stupid ! Can't go there again
Do you get a lot of stiffness in your legs?
Yes, hadn't realised until now though."
My pain started as neuropathic type pain, numbness, pins & needles ect. Then when that was managed a little better through medication, the stiffness started  I can imagine I could potentially start falling during a particularly bad flare up. |
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By (user no longer on site)
over a year ago
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"Fibro isn’t a diagnosis, it’s a symptom. Some Drs incorrectly use it when they cannot explain why it’s happening.
There are many things you can try and frequently, it is caused by food / environmental factors.
Things you can try:-
Low histamine diet (google histamine liberators / blockers and high histamine foods).
Celiac disease.
Vitamin deficiency (historic or current).
Food intolerance / allergy.
Hayfever.
Sleep. Make sure you get a full 7-8 hours sleep each night.
Things to make sure you try:-
Exercising. Start very small and build up gradually. Swimming is a great exercise as the cold water helps.
Rest in between.
If you feel the fibro has started - muscle pains / cramps / stiffness - do not exercise. Do not push yourself as you can cause other issues. Let your body rest and recover.
You should ask for a celiac test, genetic testing to rule out other possibilities of which fibro is a symptom.
Happy for you or anyone else suffering to dm me. "
You've mentioned celiac disease but I'd include all autoimmune diseases too.
Many people with neurodivergence seem to end up with fibromyalgia/chronic pain and chronic fatigue syndrome/ ME. There also seems to be a link with ND and autoimmune disease.
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"Is falling over part of the disease ? I fell again, snack on the floor in one of my fav pubs, feel so stupid ! Can't go there again "
I can be off balance some days, if I've over done it. Always bouncing off the door frames in the house, I swear they move!
Today is going to be a rest day. |
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By (user no longer on site) OP
over a year ago
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"Is falling over part of the disease ? I fell again, snack on the floor in one of my fav pubs, feel so stupid ! Can't go there again
I can be off balance some days, if I've over done it. Always bouncing off the door frames in the house, I swear they move!
Today is going to be a rest day."
Omg i'm always bouncing off door frames too ! Yeah mine move
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By (user no longer on site) OP
over a year ago
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I'm having a miserable time with loads of pain, struggling to move about due to pain, i take pain meds but they don't help much.
Yesterday was a really busy, full on day that ended in me crying with pain. Today is supposed to be busy but hubby took over most things to help me.
I wondered if there's any other info from other people that might help me ? I've tried many of the things suggested already with very little sucess. I take tramadol every day and paracetemol at times too. Some days i also need ibruprofen plus CBD oil then gin aswell
those days are bad days where i cry with pain. I do try to remember to take the tramadol regularily to try to avoid the pain becoming overwhelming but i do forget too. Then i end the day crying.
I have got tumeric to try again, when i first tried it i got bad stomach pains.
Any more help and info would be good
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You really do just have to pace yourself... I know that's easier said than done, but it was one of the best bits of advice I got from the pain management course.
I'm struggling with mine at the moment, as I'm under a lot of stress. And this time of year with the changes in temperature always affects me. |
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By (user no longer on site) OP
over a year ago
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"You really do just have to pace yourself... I know that's easier said than done, but it was one of the best bits of advice I got from the pain management course.
I'm struggling with mine at the moment, as I'm under a lot of stress. And this time of year with the changes in temperature always affects me."
Yes i should pace myself, i'm not very good at that !!
I hope you feel better soon x |
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By (user no longer on site)
over a year ago
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I was diagnosed with it in 2017 by a neurologist at the Walton hospital in Liverpool
There was no help from my Dr apart from asking if I wanted to go on anti depressants 
I was referred to a sleep clinic as I also have Chronic Fatigue Syndrome but really it is all about listening to your body and only doing what you can
All these suggestions of pills and vitamins are not helpful really as if a b12 boost helps then it's not really fibromyalgia |
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"I was diagnosed with it in 2017 by a neurologist at the Walton hospital in Liverpool
There was no help from my Dr apart from asking if I wanted to go on anti depressants
I was referred to a sleep clinic as I also have Chronic Fatigue Syndrome but really it is all about listening to your body and only doing what you can
All these suggestions of pills and vitamins are not helpful really as if a b12 boost helps then it's not really fibromyalgia "
I was also diagnosed with vitamin deficiency, so they definitely do help, quite a bit with the cognitive side and sleep |
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By *ak4uMan
over a year ago
chelmsford |
"You really do just have to pace yourself... I know that's easier said than done, but it was one of the best bits of advice I got from the pain management course.
I'm struggling with mine at the moment, as I'm under a lot of stress. And this time of year with the changes in temperature always affects me."
How did you find the Pain Management Course, did you do it online?
I found it all a bit “wishy-washy” |
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By (user no longer on site)
over a year ago
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"I was diagnosed with it in 2017 by a neurologist at the Walton hospital in Liverpool
There was no help from my Dr apart from asking if I wanted to go on anti depressants
I was referred to a sleep clinic as I also have Chronic Fatigue Syndrome but really it is all about listening to your body and only doing what you can
All these suggestions of pills and vitamins are not helpful really as if a b12 boost helps then it's not really fibromyalgia
I was also diagnosed with vitamin deficiency, so they definitely do help, quite a bit with the cognitive side and sleep"
Well in your case, they would help obviously |
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By (user no longer on site) OP
over a year ago
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"I was diagnosed with it in 2017 by a neurologist at the Walton hospital in Liverpool
There was no help from my Dr apart from asking if I wanted to go on anti depressants
I was referred to a sleep clinic as I also have Chronic Fatigue Syndrome but really it is all about listening to your body and only doing what you can
All these suggestions of pills and vitamins are not helpful really as if a b12 boost helps then it's not really fibromyalgia "
I have to take some vitamins because my body is deficient in them despite me eating well, spending time in sunshine, i'm a lot worse if i don't take them. |
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