Please tell me about fibromyalgia

[AlexaShutUp]

If you have it, how did you get a diagnosis? And how long did you live with the pain before seeking advice from your GP?

I have horrible aches all over my body and I just feel wiped out all of the time - a bit like having flu without the fever. Initially I wondered about arthritis as I have terrible pain and some stiffness in my arms and hands, but there is no swelling or joint pain. Then I googled the symptoms of fibromyalgia and they all seem to fit.

However, the pain comes and goes a bit - I have good periods and bad ones. I'm not sure if that's usual?

If you suffer with this, what self-help strategies have been effective? I try to eat well, but don't always succeed. I also try to get some regular exercise but find it very hard when all energy is sapped.

Oops, sorry - I meant to post in chat, not AIBU. I know IABU to post on the wrong board.

Hi,

I was diagnosed after being referred to rheumatologist. They ran lots of bloods and ruled out any auto immune diseases which can give similar symptoms.

My symptoms were initially put down to some major surgery I had and the after affects of it. However in hindsight I should've been diagnosed a LOT quicker and the fact that it can be triggered by trauma (the op) definitely fits my case.

I also have flare ups and I understand this is typical of fibromyalgia. Not sure I believe in fibromyalgia being an illness; I feel more that it is a collection of symptoms caused by something unknown. Anyhow it helped me more than I thought mentally to have a diagnosis as now I can try following recommended treatments etc.

I've been referred to physio (not yet started) as a first line of treatment before looking into painkillers. Other things I've found which help are pacing myself, consistent sleep routine and generally taking care of myself. When I'm extra tired/over exerted myself then I find the flare up is more imminent.

Im also trying supplements for fibromyalgia but too early to tell whether they are helping yet.

Hope that helps.

I've had it for 9 years, and had a diagnosis around 8 years ago. Flare ups are really common and can vary in length, where the pain is, energy levels and what has caused them!
It terms of treatment I did a pain management course in the NHS which was life changing, it lasted 10 weeks (one morning a week) where we learnt about pacing, simple lifestyle changes, about what different medications do, physio, and the dealing emational side of it.

I also found working out what medications work for me and what 'normal' life is for me - I've accepted I simply can do as much as my peers.
I'm happy to talk more if you want.

Watching with interest. I don’t have all the symptoms but have most of what the nhs lists as signs. I get blood results on Monday.

Took forever to be diagnosed. I had been back and forward to my doctors for a couple of years. It was only after booking a Drs appointment and having the luck to be booked in with a young, newly qualified gp who was very thorough that I was diagnosed, referred to rheumatology and to the chronic fatigue team who also diagnosed CFS.
It took 9 months before I finally saw rheumatology who then pretty quickly discharged me. I have never been referred to physio I was just given a prescription for gabapentin and that’s it. 3 years since I was diagnosed and I feel I am getting worse and worse all the time.

@AlexaShutUp you do need to speak to a dr as there are some problems that can cause similar symptoms such as Vitamin D deficiency, B12 deficiency or hypothyroidism - all of which I also have but the deficiencies are really recent whereas the thyroid problem has been for 15 years.

@autumn18 can I ask what supplements you take? I am desperate to try anything to get my life back.

Thank you all for your posts, which are really helpful. Bringback, I know you're right that I need to see a doctor. I am a bit phobic about anything medical but I'm struggling with this so I do need to take action.

How old are you? If you are in your 40/50s it could be peri menopause. Lots of aches and pains particularly involving connective tissue, ligaments and tendons.

Solly, I'm 45, so bang in the middle of your age range. I do think I have some of the symptoms of peri-menopause. I hadn't thought of the aches and pains being connected to that.

I have mild rheumatoid arthritis and one day I was asking the rheumatologist about some aches and pains and he said oh that's fibromyalgia. I looked it up later and it seemed to me a bit of a lazy title for a collection of symptoms. I tend to think my symptoms are probably RA

I was diagnosed by a rheumatologist 7 years ago after 5 years of symptoms and a LOT of tests to rule out everything else.

However, I have horrific hormonal problems too and am peri-menopausal. Flare ups are absolutely connected to fluctuations.

It's a terrible condition. I'm in a wheelchair and bedridden a fair amount of the time.

I have RA and rarely get swelling to my joints.
Definitely go to a GP. They will do blood test to check your inflammation levels.
Also look at Palindromic rheumatism. It’s a form of arthritis which comes and goes.
I would recommend writing a pain diary. It definitely helps rheumatologist when you first see them

I was 'diagnosed ' about 4 years ago after thinking it was hereditary arthritis or something. trauma of my bad childbirth experience said to have triggered it then another accident. Put up with pain for years as I hate docs and hospital etc before finally getting it diagnosed..,but I actually do think is RA but don't want the faff of going back to docs to go through it all again. Was just told by one it was ' probably wear and tear arthritis ' and that was it- deal with it. Had a bit of physio which in my experience was a waste of time. I just muddle along with it now I'm that used to it I'm afraid. The most annoying thing about this is people never seen to understand how bad it is. I'd get more understanding if I had a broken leg!!

I have RA and rarely get swelling to my joints.
Definitely go to a GP. They will do blood test to check your inflammation levels.
Also look at Palindromic rheumatism. It’s a form of arthritis which comes and goes.
I would recommend writing a pain diary. It definitely helps rheumatologist when you first see them

A similar story to pp, it took a long time before I was diagnosed
by a rheumatologist.
The best advice I was given was to pace, it really is key for me to have
some semblance of normality.
I've spent a fortune on supplements but there's 2 that have really made a difference: D-ribose powder and creatine powder.
For pain I have amytripteline from the GP but it makes me groggy and zombified the next day so very rarely take it. I use an ibroprufen gel from the GP for joint pain and otc comfrey oil.

Have you looked at polymialgia, OP? It's similar in its effects to fibromyalgia and very painful, but not so serious. I was told it will eventually just go, but that was 3 years ago. They prescribe prednisolone which should help with the pain (and the need for an afternoon nap disappears).

Please don't just accept a diagnosis of fibromyalgia without trying to find the cause. So many medical issues can cause body pain, and doctors tend to not bother looking - thyroid, low vitamin D, low B12, or arthritic or rheumatological issues for starters. Yes, I was diagnosed with "fibromyalgia" and it magically disappeared when I was treated properly for the real cause (private blood tests). Doctors may do blood tests and tell you that everything is normal, but they seem to have little understanding of nutrient deficiencies etc.

@bringbackthestripes

The supplements mentioned on here

www.easy-immune-health.com/fibromyalgia-supplements.html

Thanks autumn18 . I just need to try adding D Ribose & Carnitine, I haven’t heard of those and I’m on everything else already.

@CreativeMumma who referred you to the pain management course?

I started getting symptoms in the early 90's, but didn't get a diagnosis for about 10 years. I had one doctor who really tried to help, got me massage therapy and a low dose AD, but neither helped. Then he left the area and the next doctor was one of the "no such thing, it's bored, fat housewife syndrome". I stopped going for help.

I'm not too bad between flare ups. I don't sleep well, ever. I have a low level of pain all the time. The flare ups are difficult. And can affect me in different ways. One time I couldn't put my weight on my left foot for the best part of a fortnight, or I can't lift my left arm to wash my hair in the shower, or there's a nagging pain all down my left side and I can feel knots when I try to rub the muscles.

I hope you find something that helps you.

You wouldn't usually get a diagnosis of fibromyalgia without going through many other tests before hand. Bloods, x-ray, MRI, nerve conduction etc. When illnesses that could be determined by these tests have been ruled out then the (usually) rheumatologist would settle on a fibromyalgia diagnosis. This probably takes a couple of years and involves real determination and perseverance on the part of the patient. Despite having been diagnosed 6 years ago I still have periods of such severe pain that I'm absolutely convinced that something else must be wrong. It's a complete mind fuck, feeling like your body and mind are conning you and desperately searching for a concrete diagnosis of something that can be treated. I also agree that previous trauma plays a part, mine was a back injury. As for treatment? Pain management programme, amitriptyline, Co-codamol, lidocaine plasters, anti-inflammatories when desperate, talking therapies to try and rationalise feeling like your body is cheating you. Good luck, it's a hard road, flare ups are a fucking bitch. X

@autumn18 I think it was my gp, I saw all the usual consultants and had the tests.

I self manage now and just keep a store of strong painkillers for flare ups.
I'm not sure if it's been mentioned but 5htp (200mg) is really good for helping REM sleep. I get mine online as the ones in Holland & Barrett aren't very strong.

@CreativeMumma thanks I didn't know that and I really struggle with deep sleep!

@CreativeMumma do you take 5htp at night then? Did it help straight away? I was also invited to the nhs pain management course. I managed the first one but as they have, for some inexplicable reason, scheduled them for 4pm at a place half an hr away from me but timed them to end when it’s rush hour meaning an hour drive home I arrived home in agony, exhausted and in tears so attending is impossible

@curlykaren where in the world are you? X-ray, MRI, nerve conduction isn’t anything I was offered. Blood test, a bit of a prod and a referral for rheumatology to confirm that it wasn’t anything else was it. It sounds like you have a very thorough dr. I wish I could have my mind put at rest that it isn’t anything else.

@Katedotness1963 “bored, fat housewife syndrome”

@SugarandVinegar do you just rub on the comfrey oil? How often do you take the D ribose and creatine and how do you take them? I also can’t take amitriptuline.

Sorry for all the questions but one last one. Does anyone have agonising pains in their collar bones? If so, how do you relieve it?

Thanks all

I'm in London. Lidocaine plasters are effective, can be stuck anywhere and cut into smaller pieces for fingers/feet/joints. They would probably help over the collar bone. I'd think you'd have more luck getting initial prescription from rheumatology consultant than GP. There's also an ointment, capsaicin, derived from chilli peppers, it's effective but has to be used with care as getting it on face/eyes/fanny would have you screaming!