Help needed

[Fatgrandad]

Over 3 weeks ago I woke up with what seemed to be every joint in my body aching I've since been suffering although with different degrees of pain everyday since , I have not been diagnosed as yet but am hoping someone here can give me any insight as to what these symptoms are , I think it may be fibromyalgia but have no idea f my symptoms match , any help advice would be appreciated thank you

[Rogan1]

hi there yes that’s what it is like for me , random pain in knuckles , feet , wrists . Then the usual , hip, back etc . My gp was very quick to diagnose but then has left me . Rheumatologist won’t see any fibro patients any more so just left to get on with it !

[Whiteclouds in reply to Rogan1]

I too have pain that moves about same as you with the docs it’s because the don’t know how to treat it. It’s being researched but there is no cure I was sent for physio but had a very bad attack in my chest in the car park and could not attend my physio appointment I was sent for a scan after a few weeks to be told I had a large gall stone and since then have been getting severe pain and flares been in and out of hospital still on waiting list but nothing has happened to date I now have a high temp and in constant excruciating pain been told to come back when skin is yellow and stools are clay grey coloured. That tells me e writhing the NHS just don’t want to know.

[Midori in reply to Whiteclouds]

Hi, If you start to be sick after eating, that is a definite diagnostic sign. I would call 111 and ask for advice, as I had my gall bladder out about 15 years ago and the wait time wasn't more than a couple of months.

Cheers, Midori

[Whiteclouds in reply to Midori]

Hi Midori Thanks for your reply, I struggle eating I get pain with everything I eat and diarrhoea and times when I cannot eat at all and vomit our green bile the hospital knows this, also I cannot touch my right side or my abdomen because it is so tender but because the gall bladder wall is intact I get sent home. Are they waiting for it to perforate before anything gets done? I thought it would be more humane and cost effective to operate now rather than later when the health situation gets risky.

[Dizzytwo Moderator]

Hi there and welcome to our group. I have had fibro for over forty years. For me it was more of a gradual build up.

fibromyalgia has been known to appear suddenly after an illness, physical trauma, or significant psychological stress In some people. However from my experience fibromyalgia symptoms tend to appear gradually, and a specific event is not always believed to trigger pain and fatigue.

I really would advise you to speak with your GP. Waking up with all over pain right out of the blue really does need checking out. So many things other than fibro can cause pain etc. And if it is fibro that too needs a medical dignose. Unfortunately no one here is medically qualified to offer a diagnoses. Please see your GP. They may need to take some blood tests to rule things out.

Momo

[Yassytina FMA UK Volunteer]

Hello, a very helpful reply from our Dizzytwo, make some notes of what’s been going on as we quite often can come away from a doctors appointment and forget too mention something (I have )it may take time and like dizzy says they normally go with blood tests 1st too rule out anything else. You know your own body and we all need answers too find out what’s going on in order too start moving forward. Hopefully you will get seen very soon .Take care

[Fatgrandad]

Thank you all for the prompt replies , Am hoping to get into the Doctors tomorrow will post the outcome

[Hazel_Angelstar Administrator FMA UK Staff]

A fibro diagnosis is not considered until you have had symptoms for at least 12 weeks usually

Other core symptoms are fatigue, unrefreshing sleep and cognitive dysfunction

[Caticelolly in reply to Hazel_Angelstar]

That’s me now, cognitive dysfunction lol

[JessHoney]

I do hope you get a result, I've been in constant pain now for almost 2yrs, all typical signs and symptoms, restless leg syndrome, swollen hands, sore joints,foot spasms,shoulder and chest pain , x2 GPs and a Physio have suggested Fybro, but no official diagnosis, everyone is different so stick with it and go seek help

[Emaych61]

That’s how it was with me. Woke up one morning (the day after we got back from holiday actually) to discover that everything hurt and moving was awful - it was as though everything had seized up. It was a huge shock after two weeks of doing quite a lot of walking and hiking, some of the latter really rather strenuous, none of which had caused much in the way of stiffness. In someone who is also known to have hypermobility it came as a shock. It took three days to calm down, but was still not great months later (I could get very stiff and sore from doing fairly trivial tasks such as ironing clothes - still can). In the end I saw a rheumatologist on a private basis. He ran a whole raft of blood tests to exclude other things, eg. rheumatoid arthritis, and they all came back clear. He also checked various pressure points, quite a lot of which resulted in pain. His suspicion was fibromyalgia; very common in people with Hypermobility Spectrum Disorder (HSD) or Hypermobility type Ehlers Danlos Synlos (HEDS). Just four months later an annual health check picked up raised TSH levels (which can point to thyroid issues). I do know (having seen the blood test results) that that was not tested for by the rheumatologist; possibly it didn’t fall within his remit. So now we’re not sure whether I have fibromyalgia or whether the pain I’ve got is a warning sign that all is not well with my thyroid. The latter is now being monitored.

[Caticelolly in reply to Emaych61]

Yes that was me, double diagnosis!

[Emaych61 in reply to Caticelolly]

I was diagnosed with HSD (benign joint hypermobility syndrome it was known as then) almost ten years ago. I’d been labelled as being “double jointed” as a child and was always a lot more flexible than my peers. Chronic constipation as a child (actually an ongoing problem throughout my life until very recently - currently being investigated as to why that has changed). We now know that my bladder has twice the normal capacity and my bowel is too long, too floppy and too loopy. The HSD is almost certainly a factor in all that.

[Debsdelight72]

Good morning and welcome Fatgrandad,

Until everything else has been tested and ruled out, there is not a lot you can do at the moment,

You can try with your GP to find something to help with your pain, There is no magical cure I'm afraid,But you can try different ways of exercise to start, ( I don't mean, rushing out to purchase the latest Davina gets fit! Or those that are flinging themselves round poles and say in a more than cheery voice how they got down to a size 0)

Stretching,from wiggling your toes to just moving your head around, Sounds simple enough? But it's NOT, I'm afraid to tell you, if you don't do this even if your in a flare,

I have been there and done that, thinking you just have to stay still, NO, If you don't move you'll seize up and will be in even more pain,

Many other illnesses cross over with Fibro, The only way you will find out is going to all your appointments,listen to your body, If it says stop and rest even for just a minute, You really just stop,

If you have Fibro, Your life will already be totally different and you have to keep finding ways to be kind to yourself and make your life as good as it can be,

I hope you get the answer your looking for,

Take care Debs

[Brandy2020]

I would agree with dizzytwo to be honest, I have lupus which was diagnosed when I was 20 and that is something that feel like you’ve been stamped on along with fibromyalgia which has been diagnosed from my lupus specialist, they have to rule out other things first, good luck with getting the right help but keep going to doctors till you get to the bottom of it x

[Fatgrandad]

Hi All , just got back from Docs his initial diagnosis is Polymyalgia? But will know more in a day or two when my bloods are back , Still in pain mainly shoulder , hips , knees and ankles feel like I could sleep a week but when I wake I feel I've had no sleep at all ! Thank you to everyone again for the comments and advice they have helped if only to try and get my head round what's going on .

[MaggieSylvie in reply to Fatgrandad]

Yes, a friend of mine had polymyalga at a time when I hadn't heard of it. Her symptoms sounded just like my fibromyalgia. I haven't seen her for a few years, but I believe she recovered from it.

[Midori]

Could be, it would need a doctor to read between the lines though, as the symptoms fit several conditions.

None of us are qualified to diagnose, and we are all sufferers to some extent.

Cheers, Midori

[Q0pain]

Hi fatgrandad,Most days I wake up feeling like I had been beaten up and my whole body aches. 20 years ago I had lots of tests done, they couldn't find anything. I also suffer from hair loss from age 16, it gradually and by 20s, it was not worse but not better. Everywhere I go people think I have cancer when I wasn't. The problem continued throughout and now it's just every day pain never leaves me. Still no diagnosis and taking paracetamol and ibuprofen so long through out my life have resulted in intolerance to paracetamol and GERD. I have no idea what caused my problems and doctors don't have a clue, which is really disheartening for me. However, I hope your doctor will be able to help.

[Emaych61 in reply to Q0pain]

Just a thought - have they run blood tests to check for thyroid issues? I’d be surprised if they hadn’t (and vitamin/mineral levels too) but you never know. When I saw a rheumatologist for my sudden, unusual, pain onset that was something which wasn’t checked for, maybe it doesn’t fall into the remit of a rheumatologist. Four months later a routine blood test at an annual health check, including a check for thyroid (done on a fasting basis between 8.30 and 9.00 in the morning - the best time/conditions to check for Thyroid Stimulating hormone (TSH) levels) came back raised. We’ve no idea how long it had been like that, other than the fact that it was less than a year, and we still don’t know whether the pain I experience is connected to it. Currently the situation is being watched.

[Fatgrandad]

Got my bloods back and they were negative ! Docs putting me on Naproxen to see how I respond