Heard that call...
- didn't know what to say at first, but now you guys've given me ideas....
I'm new here but diagnosed with this 15 years ago by a sports physio after taking statins. The GP at that time however, wouldn't hear of it. I stopped taking them off my own back and the disabling symptoms stopped within a fortnight.
Muscle pain similar to fibro pain is a typical side effect that about I think 30% of people get from statins. There's some details to that I forget, I think a bit of nocebo effect involved for some of these, i.e. belief you'll get side effects. I have no problems with pain from statins, but decided to replace them with a whole host of supps like 3x1g/d nicotinic acid (B3; together with 3x1g/d TMG), to get my genetically high lipids under control, because apart from being fit, lean & heart & vessel checks being OK, I have a fairly high risk. Dunno if you've got your lipids under control? A modern "alternative" (catching on in the UK according to an expert webinar recently) is to reduce the statin to 10mg and add ezetimibe, still meds tho.
I now have a temperature tolerance of between 10 and 15C. Below is too cold and painful and above is too hot, sweating profusely to the point I have had to give up certain public speaking jobs as it's embarrassing. ...... /
Also, do you all have trouble with temperature? Not sure if that's fibro or something else?
yeah, many of us do.. maybe not exactly the same as you, but yes...
I have trouble with temperature but mine is not related to the atmosphere around me. It's how I feel internally. Like I'm burning up, have a fever inside of my body (but I really don't have a fever at all). It does make me sweat so go figure. Some dysregulation of something (not of hormones - all normal).
Most commonly fibromite bodies don't like the cold, second most the heat, 3rd neither (me; cold only for a few minutes, or as long as I'm able to move, i.e. 20-30 minutes). But the span is usually 15-25 or narrower, not necessarily 10-15°C. But sweating like that? Possible, but I think getting that thoroughly checked would be good... if possible.... First guess for a broken thermostat is thyroid, second menopause stuff, after that the docs usually give up or blame it on whatever invisible condition they know...
I have damaged neck muscles, I have permanent brain fog, shooting pains in all my joints and I'm quite (very unusually) miserable. My GP is worse than useless. ....
Do I need an osteopath, rheumatologist or physio? And someone I don't have to be referred to by my GP because I've had it with them.
The neck is extremely important - normal physios are usually too rough'n'tumble for that, but a good gentle osteopath, acupressurist, chiropractor, myofascial release physio etc. should be able to help with that. That said, I found that after my osteopaths and acupressurist had done a lot for me, my own neck stretches were what actually cured those muscles permanently. My acupressurist always did whole body cryotherapy beforehand, which was sometimes brilliant for energy and other muscles, but I now assume not my neck muscles....
For brain fog we generally recommend certain supps if you're interested. But I think I'd first try to sort out insomnia and other triggers to improve that.
Pain in "joints" always make me ask if it's the joints as in cartilage or rather the muscle tendons around them - carefully moving and feeling can help find the difference, something that no one else can do for us.
Feeling miserable would be a typical consequence of all these triggers, can develop into a depression. Something that can be tackled in a lot of different mental ways - mindfulness, relaxation, attitude/counselling.. very personal, but so many possibilities to try.
Do I think you could have gotten it taking a statin? Absolutely! .....
Yup. I resolved the MRSA but the FM hung out for the long run 😒
Fibro praps being sparked off = triggered by a med like a statin is something that isn't proven possible yet. I prefer considering meds or as in my case viruses as a trigger rather than a cause. Does it matter? As there's no proof and no antidote I spose it doesn't as yet matter if it's trigger or cause, but it can simply point us to that or things similar (e.g. all meds) that might be a general trigger for us.
Have you had any lab work done? Anyone else review your records?
Yeah, that'd also interest me - well, the first bit, doubt the last!
As for finding a practitioner that doesn’t require a referral I don’t have much insight.
The best trick in the UK to get out of this treble bind to GPs on the NHS is to go privately to Chris Jenner at the London Pain/Fibro Clinic. Every person who I've read they've done that has always got a lot of help and recommendations from them for their GPs who then are no longer able to stay in denial....
I’d guess that with shooting pains in the joints a rheum is a helpful step. At the very least they can rule out lots of things…I’d probably wait on a physiotherapist since FM or arthritis etc would be essential information for a physio I think…wish I knew more about it. Maybe @JayCS can help?
Well my first idea was to say: all of the above: osteopath, rheum and physio - they can all be dud if they're not interested or have no "sense" for fibro (that's probably not proper English, hope you can guess what I mean) and can all be excellent if they are. All a part of the puzzle. And I wouldn't wait
for an official diagnosis, I'd have a look at the ACR 2016 criteria myself (= UK 2022 guidelines), I'd try to get all the help I can in the order that is possible, praps switching, praps returning later, trying for if possible 2nd opinions, try to get everything excluded that you can, and any ideas for single symptoms or the whole lot....
I have no option to change GP. There are just 2 in my town and they are run by the same organisation. You don't get a choice of who you see, you get what you are given and it takes 2 weeks just to get a call back, they won't see you in person using the Covid ploy as an excuse.
I'm happy to pay privately in the first instance, so I'm guessing a rheum? I'll see if I can find one. We have private online Gps here who are happy to refer you anywhere if you pay them 😉. It's all blackmail and bribery here 🙄.
Yeah, theoretically changing GPs is
possible on the NHS - but I spose not if you're stuck with them in one town.... And if anyone thinks this is just for fibro, we've just had a case in the family where it's something life threatening. But as long as you're not actually dying, it doesn't matter... Of all the countries we have people from here, the UK seems best in keeping the expenditure on the health system as low as possible.... And that's not my glass half full attitude, that's full throttle sarcasm 🐶 (sarcasm = literally "flesh tearing").
rheumatologist would be a great starting point.. they can run tests and rule out quite a few other things such as Lupus, rheumatoid arthritis, etc.
Yep, and neurologists can check if the muscles and nerves are doing what they should, endocrinologists the hormones, orthopedists the joints, the bones, the tendons.... etc. But in the UK the GPs are so clever they can do all of this in the cheapest way possible.... That btw also ... might be.... the reason why in the UK 2022 guidelines they've copped out on repeating the bit in the ACR 2016 criteria that you can have fibro but also something else. Cos that'd mean it should not be a diagnosis of exclusion, it should be a diagnosis of inclusion and allow for many co-morbidities like CFS, Sjögren's etc. alongside
FM. That way they in the UK ... might ... blame everything on the fibro and not have to pay for anything else. Possibly. 🛌