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Chronic pain

Fibromyalgia question

8 replies

Cakeandslippers · 08/10/2022 16:54

I've had chronic joint issues for about 22 years. I've seen all sorts of doctors over the years and had lots of tests but nothing conclusive. I recently went back to my GP and asked about fibro among other things. She looked up my previous referrals and apparently, the Rheumatology team diagnosed with fibro in 2017.... no one told me! I do remember it being mentioned but not as a diagnosis.

I do have all the symptoms described on the NHS page and the GP (and apparently Rheumatology consultant!) agree it's very likely.

I've read around it a bit now and have found on forums people who have this seem very very ill, unable to walk, in bed for days or weeks at a time etc. This isn't me at all. I am in some level of pain constantly but it fluctuates, I do have weeks where I am exhausted and can't do more than the necessary tasks but I also have days i can go to the gym, go on long walks (joints permitting) etc. I am able to hide all this from people if I choose to. I can't do endurance sports as I used to, but I can still do some exercise.

So I'm left feeling quite confused. I wondered if anyone who has this condition can shed any light on whether it's possible to have it but still be able to manage.

OP posts:
itsjustnotok · 08/10/2022 16:57

Of course you can manage with it. My mum has Fibro and can be totally bed bound and yet my good friend has it and I didn’t even know she had fibro until she told me. I guess it’s luck of the draw. My mum met my friend and comment she would prefer my friends Fibro instead of her own.

TescoCustomerService · 08/10/2022 18:00

My MIL is diagnosed with fibromyalgia, she lives a relatively normal life 99% of the time, works part time, manages the housework, has hobbies. There are days when she can't walk very well and can't do much so she spends that day recovering. She's been under the pain clinic for many years now and seems to have found a treatment that works for her symptoms, unfortunately that's really all you can do

Cakeandslippers · 08/10/2022 22:34

Thanks very much. I think I was just surprised when I was reading that there didn't seem to be much of a range, but I wonder if people are more likely to discuss their experiences if they are having real problems managing things.

OP posts:
Luluthecat · 10/10/2022 19:51

I seem to have a flare for a week every month, although this month the flare has been two weeks. I work part time and then do the bare minimum I can do with a family - which is still a lot more than I think I should be doing when I have a flare

however I am being diagnosed with auto immune diseases so I’m not sure if I have fibro or not.

im going to start on methoxerate as there is evidence that for people like us it can really help - I’m already on hydroxychloroquine

AliceMcK · 10/10/2022 19:59

I have fibromyalgia, a total game changer once I got my diagnosis and medication. I don’t think I’d be able to hold down a job right now though, I still get regularly bad flares, but I’m not in bed for months like I was previously. This winter will be my test, first winter with diagnosis and meds. I’m hoping I will be able to be fit enough for work next year.

yerdaindicatesonbends · 10/10/2022 20:09

I don’t know if I’m much use as I’m not diagnosed but most likely have it. I have one or two days roughly once a week or fortnight where I can barely get out of bed, but I can keep going when I have to and these days usually take place only when they can. Like my body knows when the time for me to rest is. So from the outside my life would look fairly normal, and most people have no idea how much pain I’m in a lot of the time.

Rooma · 10/10/2022 20:17

I was diagnosed as a teenager (18) and have had chronic pain since I was 13. I've not been treated for fibromyalgia since I was in my mid 20s. Flare ups have been rare since I had my child 7 years ago. Can't really explain why. Never been bed bound at all. My pain was worst in education when I sat at uncomfortable desks in classrooms a lot. As an adult it's manageable with massage and coping mechanisms I've developed over last 30 years

Therewere5inthebed · 10/10/2022 20:20

I was diagnosed by a rheumatologist 3 years ago. Some days I’m ok, in pain but able to more or less function, other days getting out of bed is a significant challenge.

I’m on Pregabalin and codiene for nerve pain from a failed knee replacement and it does help with the every day fibro pain too.

I can only work two days a week now as I have to rest or a big flare up is guaranteed knocking me out for weeks.

I’m a stubborn old bird though and I try not to let it rule my life but quite often push myself more than is prudent and end up paying the price.

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