Fibromyalgia??

[lurchermummy]

Hi, I have a whole set of symptoms which I am sure add up to something but I don't know what the something is. I did eventually get referred to a rheumatologist to see if it was psoriatic arthritis, she didn't think it was, but essentially just discharged me, there has been no follow up, I feel like I've been a bit fobbed off. I'm still bothered by the symptoms, they do affect me every day and I'm a bit fed up but not sure where to go next. I did make a GP appointment but ended up cancelling it because I wasn't actually sure what I was asking for!

In the process of wondering what it could be, fibromyalgia sprang to mind. However I don't have the classic tingling/muscle pain - it's more in my joints.

Anyway I'd be interested to hear from any fibromyalgia sufferers if their symptoms are similar (or not) before I go back to my GP. Thanks!

Painful feet and ankles - very sore, stiff, aching joints (not red or swollen). I also have plantar fasciitis and Achilles tendinitis on one side. Very stiff when I get out of bed or when I have been sitting.

Restless legs and burning sensations at night in my feet and legs

Tender sore knees - painful to touch on the inside of my leg, and they also ache.

Sore hip on one side.

Stuff, achy lower back with sacroiliac tenderness, sometimes sciatica

Tight, sore shoulders

Insomnia

Get up at night a lot to wee.

Zero libido

Sometimes get an upset stomach - wind, bloating etc

Not depressed or anxious just fed up about having sore joints!

I am overweight, I know this doesn't help but exercise feels so difficult and I do have a physically demanding job.

I am 54, tried HRT but it didn't agree with me and made no difference to my joints.

If you made it this far, thanks!

Very similar to me and I've been diagnosed with Fibromyalgia by a rheumatologist.

There used to be a chart with "tender points" marked on which I don't think they necessarily use anymore but Google it and see if it matches at all.

I have sore skin (feels like sunburn).

Achey joints (but I do have osteoarthritis as well).

Stiffness when I sit still for too long, but that might be the arthritis?

Insomnia/poor sleep quality.

Restless legs at night.

Headaches (but I've always suffered with migraines anyway).

Sore, tender areas. Specifically on lower back, shoulders, and strangely the top of my head.

Memory issues and brain fog.

Utter utter exhaustion when I get a flare up.

Hope that helps.

Oh yes...and IBS!

I have all of these plus POTS and vision issues when I'm flaring.

I have a diagnosis of fibromyalgia and CFS. The fibro pain and stiffness is always much much worse in winter.

On top of joint pain and skin pain, I also have nerve pain. For example random jolts down arms or legs that feel like someone has jabbed a knitting needle into me. I also have bone pain in colder weather that I can only describe as if my bones were made from boiling hot lead.

Blood tests show nothing other than inflammation that Drs shrug shoulders at.

Thanks both for replying - see I don't seem to have nerve pain or sensitive skin. I don't really seem to fit the symptoms of either fibromyalgia or psoriatic arthritis exactly but both seem close. I can't find anything else that does. So confused.

The different types of pain come and go, often seasonal or after I have done too much.

Fibromyalgia like CFS is a diagnosis of eliminating other problems. Have you been tested for the blood marker for Psoriatic Arthritis and rheumatoid?

Sounds like Fibro to me. Have they ruled
out viruses? Have you had an MRI? I had so many tests before they diagnosed Fibromyalgia.

I was diagnosed with fibromyalgia after years of having joint pain (plus other symptoms), but having normal results from x-rays.
It took a really good GP to diagnose me. I went and reeled of all of the symptoms I had, plus all of the things I'd tried. He diagnosed me in less than a minute.
At that point, I didn't have the neurological symptoms I have now (tingling, numbness and burning sensations in various parts of my body) - that came later on. Even if you never develop those, fibromyalgia is definitely in the picture - I'm waiting to see a neurologist to confirm that my neuro symptoms are fibromyalgia based and not something else.

Thanks all, yes I had blood tests they were negative for inflammatory markers but that's often the case with psoriatic arthritis. I've only had my feet x rayed which showed mild osteoarthritis - nothing else. I think I'll go back and see the GP again and see what they say. At 54 I don't think I should be hobbling like an old woman. Thanks for your responses.

I recommend getting a high dose magnesium supplement. Not saying it will cure your problem but it is very likely to help. Also tweak diet so less sugar and concentrate any dairy, meat and gluten into the earlier meals of the day and not evening. Evening meal should be light and mostly veg.

Also have they checked your Vit D? If it’s low it can make you feel much worse.
Tai Chi has been proven to help Fibro. Although I do Pilates instead because that’s what’s available locally. Keeping moving and doing daily stretches is crucial to keep on top of symptoms. It’s probably the last thing you feel like doing and you need to be very careful not to over do it, but it really will help if you keep at it. Plus drink loads of water and keep enough sleep.

@WhatNowwwww and @DrNo007 thank you I am a bit of a nightmare for remembering to take my supplements, I'm currently taking green lipped mussel and a menopause one but thanks I will dig out the Vit D and magnesium and try and add those in. Might also see if I can get my bloods checked again. Thanks.

Are you hypermobile?

And like others have said, see if you can persuade GP to check vit D level if they haven't already

It’s recommended that everyone in the UK takes Vit D but if you’re actually deficient you’d need a prescribed high strength one.

I have similar symptoms and have multiple diagnoses so unravelling what causes what is tricky.
Foot, hand a rib pain seems to be my mixed connective tissue disease.
Achy shoulders and arms seems to be menopausal resolved with HRT.
Restless legs are a mixture of pernicious anaemia and mixed connective tissue disease.
Sore hips, golfers elbow, tennis elbow seem to be fibro.
Brain fog caused by every thing made better by ensuring I take my meds, eat well, rest, do yoga and really look after myself.
You need a rheumatologist who really cares about unpicking the problems and working out what you needs - not all of them care enough.

@Lonecatwithkitten Thanks for your response I'm so sorry to hear you have all these symptoms too! Yes the rheumatologist I saw was very pleasant, but I really felt she was writing me off. No follow-up has been suggested at all apart from physiotherapy for my plantar fasciitis and even that was a telephone appointment. I don't really know how you go about getting a second opinion though other than going private?

Could it be Long Covid?
I have this (from March 2020) and recently been diagnosed with fibro plus CFS just because it has gone on so long and all tests come back ok! Yet in pain every day.
They don't really know what to do with me I think. My gp very unhelpful ( almost annoyed) but referred to Pain Clinic who are great.

@wildthingsinthenight thanks but no it's been going on for years but getting progressively worse. Sitting here now with aching knees.

Then I think it does sound like fibro to me

I would go back to gp and insist on being referred to rhematology or a pain management clinic /team I think

Sorry you saw rheumatologist.
Ask for a pain clinic referral then.
I understand feeling fobbed off. I did did a long time. Eventually my gp was so fed up of seeing me I got referred

@wildthingsinthenight thanks I think at the least I'll go back to the Gp and discuss the rheumatologist letter with them

I could of written your post. It was not until I saw the physio for hip/leg issues that she suggested it could be fibromyalgia. The first thing she said is we need to look at you as a whole not at each little problem.
I’ve been on hrt for 18 minted now and keep getting told give it time.

definitely will be going back to the doctors.

Crohns and ulcerative colitis can also cause joint issues, tiredness and fatigue.