Any help please? Potential auto immune/arthritis?

[Artdecolover]

Hello 👋

I've had lots of health issues since my early 20s after a glandular fever infection at 18.

I was dx with ME at 23, fibromyalgia at 38 and am currently having lots of pain/odd symptoms. I did put some of it down to being peri menopausal.

I have a phone appointment tomorrow with my Dr to discuss the results of a Thoracic MRI which showed a hemangioma at the T9 vertebrae. I've had blood tests (ok) and a chest x Ray (also ok)

I know I have some arthritic changes in my spine due to an x Ray I had a couple of years ago.

My current issues are:
▪️burning/sunburnt skin feeling on rt side ribs/mid back (no redness, rash etc)
▪️pain/ache in rt armpit
▪️widespread joint pain - in hips, toes, knuckles, neck, back, rt ribs (am using hip/thigh pillow, memory foam neck pillow, have regular massages and Chiropractic treatment)
▪️pain in toes/upper foot/achilles tendons - mainly left foot where I broke my toe 2 years ago - told to go back if it got painful
▪️dry eyes - new condition dx last week. Drops 5/6 times a day

WIBU to request the following referrals:
▪️Fracture clinic for left foot
▪️Private referral to radiology for USS of rt armpit and upper rt quadrant
▪️Private referral to rheumatology

I'm so fed up of being in pain. This can't be normal can it? Sadly any dx of ME/fibro means ime that ANY symptoms are attributed to that.

I know the Dr will probably just say "hemangioma not important" BUT I have symptoms!

Any advice/thoughts?

Hi have you seen the results of your bloods or did the GP just say they were ok? Have you had your ANA levels and Rhuematoid/ inflammitory markers done? You have more than enough evidence of a Rhuematological illness and Rhuematoligist consultant should be your first point of call. You have symptoms of a few AIs including Lupus and Sjogrens, you could have some overlaps but AIs are tricky little blighters and lots of symptoms overlap. You need to ask your GP directly for a referral. If they say no , tell them you want your symptoms written in your notes, you want it noted you asked for a refferal and your GP has refused and you want a copy of those notes for a second opinion. GPs are terrible for AIs and you really need to push push push. Dont mean to sound dramatic but i have Scleroderma, a systemic illness like Lupus or MS. If I hadnt been a pushy PITA id be dead now as my lungs are hardening and im on immune suppressant therapy to save me. Let us know how you get on.

Hi,
Thanks for the reply
I had a positive ANA (sp?) Blood test a few years ago which prompted the referral to a rheumatology Dr who dx me with fibromyalgia and said to come back "when I was worse" 🤷‍♀️
She also dismissed the positive ANA resuly and said that it wasn't enough to dx anything else.
I will do as you suggest but I feel that things were bad pre covid and now it's even harder to get referred 😒

I'm very sorry you have an AI and you've had such a fight to be treated xxx

Sorry for more questions but could I get a private gp referral???
Is that a thing?

You can go private absolutely. Most NHS docs will also take private patients. What you need is a regional centre fo excellence, where in the country are you?

East midlands

I've written down your questions.and will definitely ask if she refuses!

They've had me on pregablin which is doing nothing - as its not nerve pain!

burning/sunburnt skin feeling on rt side ribs/mid back (no redness, rash etc)

^ This sounds like a post-shingles symptom

Nope never had shingles

Axial spondyloarthritis.

Your symptoms with widespread pain and the hip pain with lots of other random symptoms that do not respond to nerve pain medication mirror mine.

Do you ever feel stiff or stiffness in your lower back and hip areas?

Google the anti inflammatory diet.
For me going gluten free was a game changer. I'm close to pain free and the strange tiredness and stiffness disappeared. Not immediately but it all slowly improved over 6 months.

I'd tried 14 different anti inflammatory medication from the rheumatologist without any success and two medications for nerve pain. Again without any improvements.

The pain management consultant actually took me off the medication for nerve pain as he said it was pointless as nerve pain wasn't my issue.

For some it's dairy free or a combination of gluten free and dairy free which makes a difference.

You've nothing to loose by trying. It was first recommended to me by a rheumatologist and I honestly thought he was making it up. He repeated it again at a further appointment and I was just so desperate I was willing to try anything
I didn't think it would work but it did. After a week my head was less foggy and peripheral pain was less and each week saw improvements.

Thank you...sounds interesting...I'll look it up

Hi,
Just wanted to let you know that I am going to be having blood tests, x rays and a scan as soon as I can book them.
Dr mentioned AI and arthritis so we'll see.
Thank you.

Good luck OP

PS I love Art Deco too

I seem to remember my Rheum telling me that tendon pain (especially in the Achilles) is only involved in 1 autoimmune disease and that was Psoriatic Arthritis - I may have misremembered, but have you investigated that angle? Also in terms of your ANA, that is not a great indication without a C3 and C4 test - along with a few others. I would go private and get the whole range of bloods done then a Rheum can treat you properly - dont give up, it is a pain to get diagnosed and even to get them to perform the right tests!

The Dr has said the bloods will take 3 weeks to come back...

My achilles tendons are buggered. The Dr at the time mentioned that my collagen waajt good Dry? Dry eyes (a lovely new symptom) and the pains in my shoulders are horrendous.

Have you looked at Sjorgen's?

Good luck with the tests

Thank you

I would definitely mention the tendons, it was a later symptom with me, but my rheum was convinced that it confirmed the psoriatic arthritis diagnosis. I agree with the poster above about the Anti-Inflammatory diet, it didn't put me in remission, but it definitely helped my symptoms for a time. Don't give up until you have some answers though and push for x-rays and scans to make sure they know what they are dealing with!

Blood tests and x rays booked - just a 2 weeks wait
The scan will take longer but I'm in the system
A referral to rheumatology will depend on the blood results but I think whatever they were I will request a private rheumatology referral

Global lack of glass blood test tubes so no blood tests for 3 weeks:(

If you’re near Leicester Dr Shaffu is good.

@LockdownCheeseToastie

If you’re near Leicester Dr Shaffu is good.

Where does he/she practicem

I see her at the LRI.