Does anyone on here suffer with this. I got diagnosed Oct last yr. Iv never known a pain like it. I am suffering with terrible exhaustion. I'm on medication but I think I need it looked at again. I know swimming and yoga is good for this anyone else got things that help them xxx |
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By *ad NannaWoman
over a year ago
East London |
"What are the symptoms? Genuinely interested to know."
increased sensitivity to pain.
fatigue (extreme tiredness)
muscle stiffness.
difficulty sleeping.
problems with mental processes (known as "fibro-fog") – such as problems with memory and concentration.
headaches.
irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating.
Copied from the NHS website.
I have all the above symptoms. |
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By *ad NannaWoman
over a year ago
East London |
I went back to bed earlier as I'd crashed after getting up early.
I had a very busy day yesterday and I'm feeling it today.
I take Pregabilin and am on a low FODMAP diet to try to help the IBS.
I'm waiting for a telephone appointment with a dietician.
I sleep when I need to, exercise as much as possible, and have hot or cold baths.
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By *ad NannaWoman
over a year ago
East London |
"I'm sorry. I know people with fibro and other chronic illness can be neglected and suffer significantly under the medical system"
The first time I went to see a GP about my symptoms I mentioned fibromyalgia and she became quite annoyed, then practically threw an advice sheet at me after barking "Do you know what the treatment for Fibromyalgia is??"
The sheet had advice on putting ice on my joints, and nothing else.
It was my rheumatologist years later who diagnosed me and prescribed pregabilin.
Once I had a diagnosis I could do research of my own.
The medication itself was a huge relief.
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"I'm sorry. I know people with fibro and other chronic illness can be neglected and suffer significantly under the medical system
The first time I went to see a GP about my symptoms I mentioned fibromyalgia and she became quite annoyed, then practically threw an advice sheet at me after barking "Do you know what the treatment for Fibromyalgia is??"
The sheet had advice on putting ice on my joints, and nothing else.
It was my rheumatologist years later who diagnosed me and prescribed pregabilin.
Once I had a diagnosis I could do research of my own.
The medication itself was a huge relief.
"
I have family experience of chronic illness and there's so much gaslighting and denial involved. |
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By *ad NannaWoman
over a year ago
East London |
"I'm sorry. I know people with fibro and other chronic illness can be neglected and suffer significantly under the medical system
The first time I went to see a GP about my symptoms I mentioned fibromyalgia and she became quite annoyed, then practically threw an advice sheet at me after barking "Do you know what the treatment for Fibromyalgia is??"
The sheet had advice on putting ice on my joints, and nothing else.
It was my rheumatologist years later who diagnosed me and prescribed pregabilin.
Once I had a diagnosis I could do research of my own.
The medication itself was a huge relief.
I have family experience of chronic illness and there's so much gaslighting and denial involved. "
Another GP I mentioned it to on the phone laughed when I said I'd been to my optician and he'd said had I been tested for fibromyalgia or ME.
I stopped going to my GP for years afterwards and suffered the pain until I was sent to the rheumatology department again and told the consultant there.
If I didn't have arthritis I probably wouldn't have been diagnosed. |
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"I'm sorry. I know people with fibro and other chronic illness can be neglected and suffer significantly under the medical system
The first time I went to see a GP about my symptoms I mentioned fibromyalgia and she became quite annoyed, then practically threw an advice sheet at me after barking "Do you know what the treatment for Fibromyalgia is??"
The sheet had advice on putting ice on my joints, and nothing else.
It was my rheumatologist years later who diagnosed me and prescribed pregabilin.
Once I had a diagnosis I could do research of my own.
The medication itself was a huge relief.
I have family experience of chronic illness and there's so much gaslighting and denial involved.
Another GP I mentioned it to on the phone laughed when I said I'd been to my optician and he'd said had I been tested for fibromyalgia or ME.
I stopped going to my GP for years afterwards and suffered the pain until I was sent to the rheumatology department again and told the consultant there.
If I didn't have arthritis I probably wouldn't have been diagnosed. "
I'm so sorry.
My family member became "medically interesting" as a teenager and got a lot of medical attention/ research, otherwise I think they'd have way more difficulties than they do, particularly as one of the truly effective treatments are opioids. |
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By *ad NannaWoman
over a year ago
East London |
"I'm sorry. I know people with fibro and other chronic illness can be neglected and suffer significantly under the medical system
The first time I went to see a GP about my symptoms I mentioned fibromyalgia and she became quite annoyed, then practically threw an advice sheet at me after barking "Do you know what the treatment for Fibromyalgia is??"
The sheet had advice on putting ice on my joints, and nothing else.
It was my rheumatologist years later who diagnosed me and prescribed pregabilin.
Once I had a diagnosis I could do research of my own.
The medication itself was a huge relief.
I have family experience of chronic illness and there's so much gaslighting and denial involved.
Another GP I mentioned it to on the phone laughed when I said I'd been to my optician and he'd said had I been tested for fibromyalgia or ME.
I stopped going to my GP for years afterwards and suffered the pain until I was sent to the rheumatology department again and told the consultant there.
If I didn't have arthritis I probably wouldn't have been diagnosed.
I'm so sorry.
My family member became "medically interesting" as a teenager and got a lot of medical attention/ research, otherwise I think they'd have way more difficulties than they do, particularly as one of the truly effective treatments are opioids. "
It's a lottery getting some things diagnosed and treated.
All depending on which GP you see.
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"Does anyone on here suffer with this. I got diagnosed Oct last yr. Iv never known a pain like it. I am suffering with terrible exhaustion. I'm on medication but I think I need it looked at again. I know swimming and yoga is good for this anyone else got things that help them xxx"
Hey, I'm sorry to hear you're suffering, I was diagnosed with fibro a couple of years ago.
Have you been referred to the pain clinic? I was given a tens machine, and it can help distract me from bad pain for a while.
Other than yoga and swimming, for the pain I find heat pads/gels, cbd rubs, acupressure mats etc help. I can't help on the exhaustion front though, haven't quite found anything to help with that yet, but I'll let you know if I do!
Sending hugs x
Em |
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Remains a highly contentious subject amongst leading medical professionals.
Notoriously difficult to diagnose and then to treat with medication.
And has been said already exercise is often a leading component of successful treatment.
It's also PIP assessors greatest enemy....mainly because they don't always understand the ailment. |
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Oh bless you, OP.
I don't have fibro, but I do have Rheumatoid Arthritis and the symptoms are pretty similar.
I first presented when I was 30 and my GP thought it was all in my head. But once I got myself to a physio, I was referred pretty quickly.
My consultant over the years has been fabulous & I am now finally pain free due to some amazing new meds.
It was horrendous for 20yrs and, much like yourself, I looked "normal" so folk just didn't understand it.
Stick in there, take the meds, rest up & most importantly, listen to your body. You're the best judge of what you can & can't do on any given day. Xx |
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Yes.
Pain clinic or pain management can help.
I take tramadol and paracetamol for my pain (tried all the others like gabapentin etc)
Also, get your folate, B12, vit D checked, deficiency can go hand in hand with pain/fatigue. |
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By *ad NannaWoman
over a year ago
East London |
"Yes.
Pain clinic or pain management can help.
I take tramadol and paracetamol for my pain (tried all the others like gabapentin etc)
Also, get your folate, B12, vit D checked, deficiency can go hand in hand with pain/fatigue."
My GP is pretty good with getting bloods done as they like to check glucose/thyroid/cholesterol at the same time; which they get target money for diagnosing them. |
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"Yes.
Pain clinic or pain management can help.
I take tramadol and paracetamol for my pain (tried all the others like gabapentin etc)
Also, get your folate, B12, vit D checked, deficiency can go hand in hand with pain/fatigue.
My GP is pretty good with getting bloods done as they like to check glucose/thyroid/cholesterol at the same time; which they get target money for diagnosing them."
They don't know enough about vitamin deficiency though, they will say that because you are in range, you're ok, but that's not optimal levels. |
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Thankyou all for your replies. Bin a very hard day today. Stress is a big trigger n at the min I'm very stressed. My doc said I was goin throu the change so went on HRT patches. 3 months later still in agony went back the docs n he said so some bloods all came back fine. Went to a physio appt where she diagnosed me. Referred me to pain management which took 6 months to get an appt. And now on a waiting list for pain managemt course |
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B vits esp, as deficiency can be hereditary and quite serious.
Despite the diagnosis, keep looking at possible allergies too I'd say. Anything that could make it worse. Look at the fasting maybe, and the two then even-one meal a day diet. Gives your body the time to heal. pt |
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By *alet18Man
over a year ago
Honiton |
I also have fibromyalgia had it for about 3 years is horrible you get a good day and over do it and pay for it for days . I do find swimming helps definitely. If you can try cold / fresh water swimming it really helps . I find the meditation puts weight on you but can’t do without the meds . |
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