Does this sound like fibromyalgia?

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Patients Fibromyalgia

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Posted on

 Hi Everyone

I am new to this but need to discuss my symptoms as due to lockdown my diagnosis stopped and I'm struggling ho understand what's happened to me.

Was diagnosed with OE after 1 x-ray then lockdown! No great surprise ax I've struggled with joint wear in shoulders and kneck for 30 years just told to go to Oseopath !

Over past year started to get restrictive movement in multiple joints if I tried to push through it I end up in severe debilitating pain not just joints but muscles aswell and extreme fatigue. I almost pass out if trying to resist sleep. I can't walk any distance have just bought a mobility scooter to do food shopping. 

I was referred to Muscularskeletal department who called and after a conversation with me referred me to RS department and am still waiting.

I'm writing after another night of about 4 hours broken sleep.

Does this sound like Fibromyalgia to you?

Beginning of the discussion - 27/08/2020

Does this sound like fibromyalgia?


Posted on

RA Department, typo.

I weight trained and swam (a lot) as I was a competitive swimmer, I actually blamed my shoulder problems on excessive swim training and lower back on flip turns looking back I was always struggling with aches and pains even in my 20's I sm now 58.

Does this sound like fibromyalgia?


Posted on

RA Department, typo.

I weight trained and swam (a lot) as I was a competitive swimmer, I actually blamed my shoulder problems on excessive swim training and lower back on flip turns looking back I was always struggling with aches and pains even in my 20's I sm now 58.

Does this sound like fibromyalgia?


Posted on

Can anyone relate as I find it hard to accept as I look like theres nothing wrong with me but feel disabled its rereally confusing and hard to accept.

I changed 2 tyres on the mobility scooter  few days ago (I was a mechanic) so a nothing job to me, took my time, no excessive straining thought I'd  be fine. Then the pains started a few hours later and been in bad pain for 3 days, shouders kneck and knees thats normal now finge joints I guess from using the ratchet spanner....so difficult to accept. What do you think ?

Does this sound like fibromyalgia?

• Community manager
Posted on

@Simonr3585 Hello Simonr3585, thank you for opening this discussion. I'm sorry to hear you're in so much pain. I think many of us can understand the frustration of not being officially diagnosed. Let me tag some other members who can share their opinions with you.

Hello all, how are you today? What do you think? Do Simonr3585's symptoms sounds like fibromyalgia to you? Do you have any advice to share with him about how to cope with the pain?
@Rhianon@Anniebod@Rachel0224@Jonolco@Karenp12@AmiraJustine@Jojostarkey@Deadlego@tiggyb@LaurieLee@QueenTak@Crissy202@ZoanneSmith@pinsnneedles@Bebbabe53@mazp43@NickyS‍ 

Take care,
Courtney

Does this sound like fibromyalgia?


Posted on

Courtney_J

From what you have told me on this letter. I think you definately have fibromyalgia. If you have the pressure points of pain as in the rheumatology feature as in University if Rheumatology you will have. Do your muscles in your arms and legs burn as if they are on fire, have memory issues or brain fog. Ali can you sleep all night without painkillers. Do you get fatigue and if you overdo a job one day suffer for a few days unable to move then you have this syndrome. 
Only thing you can take is analgesics for this plus your doctor will prescribe some other medication to go with those. 
There are many things that relate to fibromyalgia and it has to be diagnised by a rheumatologis

All the best for now and I hope that you do not get pain as extreme as I do.

Take care and god bless you xx

Does this sound like fibromyalgia?


Posted on

It can be difficult to accept that something you can't see or measure externally (except with brain scans) causes so much pain and exhaustion. Do you have other symptoms such as fatigue (way beyond feeling tired) and find your thinking is slowed or you have trouble forming sentences after (brain fog)?

I've had to adjust to needing at least one day of rest after any trip out no matter how short. I actually booked them in my calendar at first so I wouldn't forget and commit to doing too much. A long train trip to visit family/friends needed at least two days, a flight to the USA to visit my father resulted in me crashing at his home and needing to lie on his bed before I could make it back to the hotel on the second day and over two weeks of extra pain, brain fog and fatigue after I got home.

I have problems sleeping even though I'm over tired too - I have sleeping pills, but only up to 7 a month just so I can at least sleep before days out or when I have extra work to do.

Very few people in the UK will be referred to a rheumatologist as far as I know - but after a few years of visiting my GP who tried a very low dose of amitriptyline (this might help) and who was reluctant to prescribe stronger pain meds, I was referred to the hospital pain clinic, who offered the loan of a tens machine to see if that helped (it helps me with osteoarthritis but not fibro pain), and give me prescriptions for co-dydramol and pregabalin. They wrote a very helpful letter to my GP about alternative treatments if the pregabalin wasn't tolerated or for when it stops working and suggested codeine might help at night. Not everyone manages the initial side effects of pregabalin but it suits me now I am used to it, and it was a relief when the restless legs syndrome stopped (another symptom of fibro). GPs might be cautious about prescribing either as the government is anti stronger pain meds so a referral will help with this.

Both drugs slow me down a little and so I 'self-medicate' with coffee if I have a meeting or work that requires concentration - caffeine also allows me to push through the exhaustion for a while although it is not a good idea to overdo that as when I crash I can't even walk in a straight line let alone think!

Does this sound like fibromyalgia?


Posted on

Hi Tiggyb

Yes so much runs true with how I feel, extreme exhaustion after the smallest of tasks. I was a mechanic and had a small garage so loathed to pay for the things I should be able to do so I thought I would go steady and replace two wheels and tyres on my mobility scooter last week. In normal circumstances a 30 minuit task, took one and a half hours having to take rest breaks. Two hours later the dull ache started headache and fatigue and then worse for three days I was in chronic pain almost all over with the worst of that in the OE joints and surrounding muscles. Prescribed Co-codamol makes it tolerable couldnt stand at the sink for more than a couple of mins a time and yes havent slept more than an hour or two at a time get about four hours a night as I wake in pain and really stiff hard to sit up in bed even.

Thanks for your contact just trying to find an answer really as cant get much further with any diagnosis in lockdown, just knowing it is what it is would some how be settling although not great !

Does this sound like fibromyalgia?


Posted on

Hi Tiggyb

Yes so much runs true with how I feel, extreme exhaustion after the smallest of tasks. I was a mechanic and had a small garage so loathed to pay for the things I should be able to do so I thought I would go steady and replace two wheels and tyres on my mobility scooter last week. In normal circumstances a 30 minuit task, took one and a half hours having to take rest breaks. Two hours later the dull ache started headache and fatigue and then worse for three days I was in chronic pain almost all over with the worst of that in the OE joints and surrounding muscles. Prescribed Co-codamol makes it tolerable couldnt stand at the sink for more than a couple of mins a time and yes havent slept more than an hour or two at a time get about four hours a night as I wake in pain and really stiff hard to sit up in bed even.

Thanks for your contact just trying to find an answer really as cant get much further with any diagnosis in lockdown, just knowing it is what it is would some how be settling although not great !

Does this sound like fibromyalgia?


Posted on

Hi Rhianon

Yes pressure points really tender on what feels like ligaments on arms and back especially and pain is bad and probably worse as it is underlying content and then gets much worse after the slightest of activity  a shopping run on a mobility scooter makes me feel like I've run there carrying an elephant !

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