Juggling act with no answers or advice

[Rosethornend]

Over last 3 years I've had blood tests done because of sypmtoms not related to my Fibromyalgia. My bloods have come back positive to Thyroid disease twice and went back and more recently Lupus I do have a rash across face but I also have dermatits.

I have also crippling joint painsl in my right hand side. My shoulder/blade area, Hip, Knee grind and sore pain, fingers & toes icy cold, very gritty eyes to name a few and my glands are always up and down (lymph nodes) . I went to Rhumatology to have areas looked at. Strangely they did not scan or look at knee or hip even when, I explained the areas again they just scanned shoulder & toes. It made me felt invisible. I explained my knee and hip need looking at too trying to get it done properly save time and NHS money. The man looking said he could not look elsewhere because the Rhumatologist put just those 2 areas on the notes. My shoulder came back showing Inflammation in shoulder. Im waiting for physio and been given vitamin D? Still no answers.

I am in lots more joint pain in recent months which seems to have progressed over 2 years same side mainly when I rest. I went to see my own doctor (barely knows me) who told me to stand for a min. She said it's probably my flat feet get some insoles!

I had a stand in doctor during lockdown who has now left. This doctor recognised my symptoms as Lupus on my face and symptoms not Fibromyalgia the only thing she was unsure of was my shaking and weakness.

Years of pain thats getting worse. No other advice no help on pain relief ideas. No explanation to why my bloods/urine come back time after time as a positive autoimmune disease. All seems just to be put down to Fibromyalgia again and flat my flat feet ?

Fibromyalgia for me is a daily juggling act (like for most of us) . When you have other non related symptoms it's like having too many balls to juggle. I'm really stuck what to do, take or how to move on.

[bantam12]

Are you taking thyroid meds ? If yes you may need a dose adjustment and if you aren't on Levothyroxine and your results are up and down it means autoimmune hashimotos and you need to be taking Levothyroxine, post your results on Thyroiduk for advice.

[Rosethornend in reply to bantam12]

Thank you bantam. Part of the problem is getting diagnosis to get mefication(im diagnosed with Fibro) . It shows up then goes and my symptoms like many auto immune diseases cross over which makes it even harder lasts for months.

I know not all tests are accurate but can anyone tell me the likelyhood of more than one auto immune disease showing up over the last couple of years with a whole range of visible/non-visible symptoms and it being nothing?

[bantam12 in reply to Rosethornend]

Anyone with one autoimmune problem is likely to gather more along the way, it's a well known fact. With Hashimotos results will fluctuate as the thyroid swings from hyper to hypo until it eventually burns itself out, you just need to find a Dr who recognises that ( most don't!) and will start you on treatment.

[LoneEra]

I find it very odd that your bloods are flagging autoimmune involvement and the doctors are not interested. Lupus, as no doubt you know, involves the whole body - not just the face!

I would suggest trying to get a second opinion from another rheumatologist, if your GP will refer you. If this is not possible, you could try seeing a different GP in your surgery. Or writing them an email or letter that asks outright why your bloods show you have an autoimmune disease but this isn’t being taken seriously.

Also, they could refer you to a physiotherapist for help with issues surrounding your flat feet. The physio will give you exercises for tight muscles etc.

Don’t give up - keep asking the doctors!

[Rosethornend in reply to LoneEra]

Thank you for your advice. I have had fantastic service from NHS over the years however with the things the way they are Im starting to feel like im invisible. It seems the days are gone where you have a GP that knows you for years so can tell by looking at you theres something wrong. I have thought about changing my GP surgery but fear not being taken seriously because of the shear amount of symptoms. My long standing GP left just over 2 years ago because of workload just after I became diagnosed with Fibromyalgia he noticed then that there were other strange symptons large bulges under my chin this seems to have been swept away.

I've gotten through so many illnesses through life tough ones too without fussing. I've learnt to manage things mentally and healthily often getting advice from family members when possible who are qualified Drs and healthcare professionals and spent years helping others with positive thinking stratergies even taught mindfulness etc.

For me the lack of understanding and knowledge is starting to become far more crippling than my illness. I am genuinely feeling stuck in the mud and want to go into a ball.