I think I've had a lightbulb moment - Fibromyalgia(17 Posts)
Bear with me, this might be lengthy.....
Early 30's I began having joint pains. My GP diagnosed me as hypermobile with scoliosis (which I knew anyway) and basically gave me painkillers. I've spent probably eight years now struggling along with this. Occasionally I've been back for different things such as severe itching in the night and persistent burning pain in certain joints but HM is always blamed and I've been sent on my way.
I'm now 40. My symptoms are as follows:
Permanent joint pain and burning sensations in most joints, it can be in any combination of joints and between my shoulder blades. Currently my left thumb is incredibly sore and has been for about a week. Joints can hurt to the touch and hurt to move. All joints are stiff and worsen with the cold. If I have been sat for a while I can't get up properly because my ankles feel like concrete if that makes sense.
Extreme tiredness. I can go to bed at 9pm and sleep until 11am and still feel completely drained and nap in an afternoon. Some nights I can't sleep at all, despite feeling totally exhausted.
Stomach issues. I initially blamed the codeine I'm on, but I'm now not so sure. Normal bowels in the day then met with crippling stomach cramps and diarrhoea at night which then returns to normal the following day. I've tried to find a food trigger and can't.
Night itching. I saw the GP with this, he did menopause bloods which all came back clear. I now take a piriton at night but often wake covered in bloody scratches where I've gouged lumps out of myself.
Fog. I can't always remember words, I know what I'm trying to say but sometimes it wont come.
Bruises. I admit I'm clumsy but some of my bruises can be huge and I have no recollection of them. The latest being an enormous apple sized one on my inner arm, it was bright green and purple. I have no idea how I've done it.
For eight years I've plodded on taking nortriptylene, codeine and a small dose of diazepam with little medical intervention, my medication is on repeat and I last saw a GP about 18 months ago. I've just assumed it's my hypermobility causing these symptoms. My lightbulb moment was reading something about FM and thinking 'God thats me'.
I do work, but only for a couple of hours mid day. I'm not sure I could do any more than that as I'm exhausted when I get in and it's hardly challenging.
I need to go back to the GP don't I? We've had a reshuffle and I believe we now have a lovely new female GP who's very good. Do you think she'll laugh at me and tell me it's my hypermobility? Should I write down what I have here and show her?
I feel utterly depressed with it all. Occasionally I can get out of bed, feel great and have a good day but currently those days are few and far between
Definitely go back. Sounds like more than just hypermobility. Most people with fybro start out with a hypermobility diagnosis. Have you read much about types of EDS? Theya re all connected conditions.
I'm booked in with new lady GP next week. I think I'll take the notes I've made above with me as I have a tendency to forget things.
I have read about EDS but was told the HMS wasn't severe enough to be EDS (even though I thought I hit several markers for it). My joints don't really dislocate much now, in fact they aren't even that mobile any more, just stiff and painful.
I had repeated X Rays on my left hand over 3 years as I kept returning complaining about the pain in that hand. GP thought it might have been arthritis (it wasn't), but it kind of came to the conclusion of 'well, it's not that, it's just a HMS thing'. I pretty much gave up going back after that and resigned myself to all the aches and pains just being HMS. It's only now I realise that actually, it might not be.
I'm going to see my doctor tomorrow, I'm 38, severe sciatica which I blame everything on ( nearly 11 bloody years ) but pain is widespread, I'm scatty, sleeping pattern all over the place and am constantly exhausted.
Please let us know how you get on, I literally saw your post and thought " see I'm not going mad this is a real condition " xx
Get some blood tests done too, some of what you describe suggests possible thyroid problems, B12 deficiency or coeliac disease. All auto immune conditions of which there are quite a few so may be other things to be considered!
I'm not sure if saying most people with fibro start out with a hypermobility diagnosis is accurate, but quite a few people do have both.
I'd ask GP to rule out other things first . I think it's a diagnosis of exclusion. Eg thyroid can cause fm like symptoms.
I have blood forms for thyroid/diabetes/vitamin levels etc.
Doctor quite dismissive of fibromyalgia it's like some don't want to admit to it.
Anyway we shall see what the bloods say
The bloods I had for the itching included thyroid as I'd mentioned tiredness at the time, all came back normal so I've no reason to believe this is thyroid related but hopefully she'll go through all this.
I go on Wednesday so I'll update after I've been.
Ironically it's one of those 'can't sleep' nights. I am exhausted as I had a pretty good day today and wasn't in as much pain so managed to get some cleaning and washing done. I've been lying here since 10.30 but just can't nod.
I think I'd be inclined to agree that fibro symptoms do go hand In Hand with insomnia. I guess it's a bit chicken and egg though.
I would say I had fibro symptoms last year. If I'd been with it evough to answer rheums questions properly I'd hsve been diagnosed I thing. I was diagnosed hms, but lots of other things were going on too - issues with thyroid meds, (too low then far too high) extreme muscle weakness and an addisons test which was clear but I feel the extra blast of cortisol caused more issues.
Sleep has been one factor, pacing and careful pain management the other. I couldn't tolerate amitriptyline and in a way I'm now glad but it's been hard. In the end it's looking like a contributing factor may have been mild asthma - so not getting enough air at night (or all day) might have also been an issue over a looooong time. Some symptoms started coming back just before diagnosis - I'd had an epic 10 week cough, plus oral steroids (so possibly an after affect from steroids?)
But oddly I noticed an improvement to the itching and pain and tight muscles as peak flow improved.
This is all conjecture though.
I feel for you op - it's terrible.
The rheumatologist did ask all those questions (your symptoms) and concluded hms. But fibro is often an issue.
I feel like you've described ways of coping rather than trying to improve things (I hope that doesn't sound bad - trying to help)
What else are you doing? Eg pilates etc?
I must say I started turning a corner when I read 'the pain toolkit' online - the guy who write it is a bit scantimonuous but I found the tips helpful. I really hadn't got pacing at all. In good days I do far too much and pay the next day.
Hi op im so sorry youre feeling ill. I would ask your doc for full bloodwork to check for auto immunes like lupus as lots of your symptoms mirror this. Your inflammation levels are a good marker for auto immune issues. Also I noticed youve had x rays for arthritis, ultrasound is much better for this , mine didnt show on a xray but did very conclusively on a ultrasound. Best of luck keep us posted
I'd ask for a referral to rheumatology. I saw one and he diagnosed fibromyalgia. I had/have pretty much all your symptoms including the skin rash and digestive issues. Fibro sucks I'm afraid.
Firstly, apologies for the delay in updating. In the blur I have become lately I actually made an appointment for today, not last week
I was in with the GP for an age. Embarrassingly I had a bit of a cry, I don't think I realised how low this has all left me feeling. She went back through my history to my first visit for burning pain and tried to establish where I was at, at that point. It was just after my Dad died and I'd nursed him through Lung Cancer, apparently this something that is often seen and can be a trigger.
From there on we went through every appointment I've had and she said every visit was like someone waving a banner of fibro but unfortunately nobody had ever put those symptoms together. The joint pain was lumped in with the hypermobility and the other issues just treated as one off events. Of course my failure to follow up with these didn't help either, when my bloods for the itching came back normal I shrugged it off and bought antihistamines.
Anyway, I've had many many bloods taken just to rule out anything else, but she was so convinced I do have fibro she has started me on Duloxetine and I'm to go back in two weeks. If the bloods come back clear I'll be referred for the final diagnosis.
I feel like a bit of a weight has lifted. I feel like finally someone understands and doesn't think I'm just a moaning cow who likes her bed too much.
I've been warned these tablets may make me feel a bit ropey before I feel an improvement so fingers crossed for the next two weeks for me.
404Username - I struggled on like you. I eventually printed off the NHS website for fibromyalgia with the list of symptoms. Took it to my GP and told him it was fibro. He agreed.
I am on 30mg of Amitriptyline. It has relieved a lot of my symptoms but still get the occasional relapse.
If the Duloxetine does not work then do ask for Amitriptyline. It is a fairly common treatment. Actually an anti depressant but it helps me sleep and relives pain as a side effect.
Hypermobility is very commonly associated with hypermobility syndrome and also a range of autoimmune conditions. Its cause is not really understood but long term health conditions are quite commonly understood to be associated with it or extreme life changing events.
Beta I was on Amitryptyline as part of my hypermobility medication to try and deal with the pains in my hip I get in the night. I'd been on it for a while but suddenly seemed exhausted and lethargic, I wasn't functioning in a morning properly so they changed me to Nortyptyline. I take that at night (cant recall the mg dose at present).
I'm told to take the Duloxetine in a morning with food, which itself will be a challenge as I have no appetite until late afternoon. I'll have to force down a round of toast.
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