hello, is there a FAQs section or Symptoms page I can refer to here please?

[Stills]

I beginning to suspect I may have fibromyalgia. I have Adult Onset Stills Disease which for me manifests as Rheumatoid Disease. I have other associated AI conditions such as LS, DC and IC , gastric distress and recently diagnosed with Orthostatic Hypotension but I doubt this thinking vestibular migraine instead. I need to get a diagnosis although I believe there are no medications for fibromyalgia but rather self treatment options? All input welcome as I’m desperate to feel better and get back to my normal.

[Hazel_Angelstar Administrator FMA UK Staff]

Hi, we don't have anything on here but you can find more information at our main website fmauk.org and our patient information booklets at fmauk.org/publications

[Stills in reply to Hazel_Angelstar]

Thank you

[bookish]

Hi. A quick look at your profile and other posts shows that you have really been through a lot over the last year or so. I wonder firstly if you did try gluten free, as with so many autoimmune issues going on and gluten reactions after eating it is likely to be a part of the story for you as it was for me (and is for many). Coeliac testing only reliably picks up late stage disease, and doesn't pick up non-coeliac gluten sensitivity at all, so it would be worth either full genetic testing if you have the energy and the £ (which I didn't) or an anti-inflammatory auto-immune elimination and reintroduction diet, just to see. But also, your nutrient levels will have been flattened by that much stress, so has anyone actually looked at those? Especially, but not only, magnesium, vit B12, B9 (folate), B6, vit D, zinc, vit C. You may already be supplementing and have all those under control, but please don't supplement any B vits before testing if you aren't already as it skews the results and may mask an already hard to diagnose deficiency or deficiencies. In our family B12 drops like a brick under stress, even if we are taking supplements and continue to do so. (And your PPI will reduce acidity making B12 metabolism increasingly difficult). Just a thought. Best wishes.

[Stills in reply to bookish]

Hello and thank for your for you reply, I appreciate that you read my posts as well. Yes it’s been an emotionally tough year and as we approach the anniversaries of the deaths it’s getting more so. In addition family fall outs have saddened me greatly in fact I feel my heart is broken but I know I won’t die from it.

I’m certain nutrient levels were not tested but I know iron was ok. The policy at my surgery is they let you know of any abnormalities, so no calling up for results. They don’t issue print outs and their online system is in development apparently! I do not supplement but eat well, seeds, nuts, fruit, lots of veg and dairy….. I have not tried gluten free yet but have noted that breakfast cereal (shreddies) create a reaction so I’m thinking of gluten free bread for breakfast and no cereal as that’s the main gluten source in my diet. A small but hopefully positive step.

Headaches are constant, sleep elusive and plagued by horrors, I feel full of dread. Joint pain and muscle pain continues, indigestion and tummy not too bad, weight loss stopped but not regained, hair and nail’s improved, fatigue, sore throat and eyes always there, skin rash increases with afternoon fevers. My leg injury sustained Oct 20 hurts constantly and I just feel used up.

I know I need to get it together mentally first before I start anything else but feel like I’m hanging in a cliff edge by my finger nails at the moment and not able to save myself. I think once Xmas is over I may muster the effort.

Sorry for the disjointed ramble and thank you for your message.

Edited for clarity

[bookish in reply to Stills]

I am sorry, sending you a virtual hug. Anniversaries can be very hard and Christmas too. Good news that the weight loss has stopped and the hair and nails are better - I saw that as a real turning point when it happened for me, and the weight did go back up to more normal for me after a while. Your gluten free plan sounds good, hopefully you will see some immediate benefit as I did, which makes you more determined to stick with it. It also made me realise that making changes for myself could make a real impact. Your surgery sounds like a nightmare and that policy is utter rubbish but more battles than you want right now, I understand that. Magnesium is deficient in most people and it is rarely tested (not that accurate as tested by NHS anyway) and it can be very useful in fibro and pain conditions as well as helping you sleep and calming anxiety, so might be worth a try. I use Better You mag spray (sensitive) on inside of wrists at night. Take it slow if you try it and build up if you are getting along ok. Not on broken skin or near eyes. Any chance of doing private testing, maybe in the new year? Medichecks often have offers, and each week do a Thyroid Thursday discount on one of their 3 thyroid tests. The full test includes folate, B12 and vit D as well as TSH, FT4, FT3 etc. Could give you some pointers. B12 and folate are hugely important for mood, anxiety, depression, brain function, not just nerves and metabolism throughout the body. Keep hanging on with those improved finger nails and you will get there. Best wishes.