Fibro or not?: Hi all, new here. Not... - Fibromyalgia Acti...

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Fibro or not?

ERA21
ERA21

Hi all, new here.

Not sure whether I have fibro or if I'm just shattered? Looking for reassurance/advice.

Outline of 'symptoms':

I've struggled with fatigue and feeling exhausted all the time for the last 6/7 years. I sometimes struggle getting to sleep, not always, but even 12+ hours of sleep doesn't leave me feeling any less tired or refreshed.

I've always suffered with anxiety, but for the same 6/7 years I have also had depression/eating disorder/SAD which are being treated with anti-depressants. I am in remission from my eating disorder now and have been for two years (as this was initially thought to be the cause of joint pain and lack of concentration).

I suffer with bad headaches around the same time of year every year (and have done for the last 2 years) but GPs have not come to any conclusions with this and it has not been investigated.

In terms of pain, my body constantly aches (especially knees, hips, back, shoulders) and if I do any activity out of the ordinary I get more exhausted. After a week at work (I am a teaching assistant), I find it difficult to do very much at the weekend as I am so tired. I get worse pains in these places at times which make it uncomfortable to do things like walking and sometimes even sitting. My wrists and hands are also painful if I use them much (I am a student so there is a lot of writing/typing).

I get pins and needles very easily in my feet and legs and get extremely restless and need to move to relieve stiffness when sitting down. I also constantly feel the need to stretch out my joints, especially in my back, shoulders and knees, but this rarely relieves discomfort for long.

I have a direct cousin with ME and multiple relatives with arthritis/joint problems. I have had blood tests to check for arthritis (which did not show anything), but other than that I have not pursued this any further with my GP because I was swept under the carpet when I mentioned joint pain and tiredness before.

I'm not sure how to approach this now, because it is affecting my ability to work and study the way I would like to. Going to work means am too tired to study much at all and things like socialising and spending time with family just don't happen.

Does this sound like fibro or not? And how do you approach this with a GP? Any advice or insight would be really useful.

Thank you

5 Replies
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Hi ERA21, the symptoms that you’re describing could be typical of many illnesses, and that is why you are only given a diagnoses of Fibromyalgia after all other tests, scans etc have been carried out, and all have come back negative. Sometimes it can take years to get a diagnoses.

I think your best bet is to consult your GP and discuss your thoughts openly, and ask the question “”do you think I have Fibromyalgia?”

In the meantime you might like to have a look at our main website fmauk.org. where you will find lots of info about Fibromyalgia.

Good luck.

GP. 😊😊

May I suggest you keep a diary of your symptoms and ask your GP for a referral to a rheumatologist. If you put the request in writing and follow it up with a telephone consult you are more likely to get the referral as your letter will form part of your notes and will not rely on the GP recording your request. Have you had your Vit D levels checked as this can cause aches and pains.

It can be a long road to a formal diagnosis - many on here have waited years and years. Be prepared for a long haul but you can help by keeping detailed notes as often during consultations it’s easy to forget questions/symptoms. Good luck

Hi ERA, of course you are right that all this could easily also be FMS and/or CFS, but as the others've said it all needs to be checked. If your GPs don't help, try talking about the fibro first, if they don't know about it, they may read up on it, otherwise get a new one quickly, but immediately ask for the rheum-referral as Dinkie's said. It's easy for docs to put it all off as psychological as soon as they get a hint of that. But it's very likely not in the head, it's real, if interacting. How much you are going to do about it depends on your motivation and the *amount it's affecting your work & study. As mine is affecting me very much & I am also very motivated I tried pain & sleep herbs, 40+ docs, their meds & treatments, quite a few PTs and pinpointing symptoms, what helped least was the first, what helped most were the latter.

You've probably done CBT against the anxiety whilst in therapy I'd assume? A new counsellor there might help more, as it's obviously not got better yet.

Whether or not these symptoms are fibro, that diagnosis alone won't help get rid of them.

You could try combating fatigue & exhaustion & anxiety (& headaches?) with a breath-holding exercise healthunlocked.com/fibromya... (I used cold showering & whole body cryotherapy too).

You could learn back exercises, yoga, arm/hand exercises against the pains, aches (pins & needles?), restlessness, need to move from PTs, osteopaths, acupressurists...

Yassytina
YassytinaFMA UK Volunteer

healthunlocked.com/fibromya..., Morning, after reading your post you have been suffering a long time now, if your current doctor has brushed your symptoms under the carpet I would differently seek to see another one, I had the same problem but did get a new doc at the same surgery, was diagnosed with Fibro and then Cfs eventually, don’t be robbed off you would like some answers and ways to help cope living day to day , headaches too should have been checked, I had blood tests, BP checked on my machine for 2 weeks worth of readings luckily it didn’t go beyond that, but your ticking lots of Fibro symptoms, pick up the phone Monday and make sure your heard and start the call moving forward. Can always pop on the forum to read posts and have a chat in the meantime, have posted a link above if you want to lock your posts as only our community can see and not open to any other sites on the net. Let us know how you get on .

It is quite difficult to tell, as Fibro brings different symptoms to different folk. For me, the pain is almost totally waist and below, although I am now experiencing weakness in the arms and hands which make cooking difficult. I'm a bit of a liability as I keep dropping sharp knives, and one day I will skewer my foot!

I have digestive problems, diagnosed as IBS, although I'm now sure it is a mild gluten intolerance, as bread, cakes, pies, pastries and pasta all give me problems. However, I can't be diagnosed via blood test as I have already removed these things from my diet, and am doing much better.

It is also probable that I have a Thyroid deficiency, as I cannot seen to lose weight, have dry skin and nails, and my hair is rapidly falling out. I also have a low temperature and feel the cold badly.

These are just my symptoms as an example of how wide a net Fibromyalgia covers, other folk will have different ones.

The best thing, after Covid, will be to get your GP to refer you to a Rheumatologist, who are most likely to be able to diagnose it.

Cheers, Midori

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