Undiagnosed Autoimmune with back pain, spasms, and stiffness

Ohhh Amberlyne!
I am 72 but your situation is so similar to mine although I don’t have diabetes, I hace trigeminal neuralgia for which I have a pain pump that ends almost in my brain so it does not help all the other symptoms. The funny ( or sad ) part is that just like you my rheumatologist who diagnosed me with Rheumatoid arthritis four years ago, is now doubting and sends me to the neurologist who confirmed arschnoiditis and TN and CRPS and now he says I have Small fiber neuropathy and Raynaud’s so now he sends me back to rheumatologist
I have poliarthralgia and on and off my my veins in hands or feet swell up, hurt a lot, then burst in seconds and I get a bruise. It happens in fingers, toes and in the sole of my feet. Also anyone with little painful ball under fingers or toes ? And the move under the skin and they hurt a lot. Anyone ?
I also have pelvic floor dysfunction
But I am a grandma of four and although I use a wheelchair and cannot cook I can still play and read stories. But I can be very frustrated at times
My new thing are the small balls under small joints
Anyone?
Thanks a million for reading this to all who do!

@kenyalama you had started this same discussion before—did you not receive any help?
https://connect.mayoclinic.org/discussion/nodules-under-knuckles-and-under-toes/
What have your doctors said about the small balls under your toes?

Thank you Becky!
Rheumatologist says neurological everything. Neurologist said part neurological but also polyarhritjs so sent me back to rheumatologist
Conclusion: they don’t seem to know I also have those veins episodes with burning sensation, swelling of the vein, bursts of the vein, pain subsides but I get a bruise. Humira stopped that for three years but they are back with the little balls added to the fun. Lol
That’s why I wonder if there’s somebody else experiencing the same

Many people are getting ANA results. It is not a full diagnosis of Lupus or Mixed Connective Tissue Disease, but I believe you can have symptoms of each overlap without the RNA part. Stiffness, cramps, pain in muscles is part of fibromyalgia. You may find relief from a daily walk, a massage (I do edema massage for legs and arms) and basic Yoga or PT stretches. You can get images, but it may not show much beyond Osteoarthritis. With this, movement is important and avoid staying in bed or recliner, resting. Amend your diet to non-processed foods, avoid sugar and aspartame, white potatoes, tomato, dairy and whole wheat. Some of these will be no problem for you, but most of "us" do. For carpal tunnel, you want to work on posture (!) when working on computer and do the hand/wrist exercises. I like Dr Jo on you tube. Wearing a splint at night will keep you from curling wrists when sleeping. Right scapula: You might go to a gastroenterologist to be sure your gallbladder is good; I thought it was pleurisy. A Salon Pas lidocaine patch at night works well. PT might have a stretch for that. The lower back issue is likely piriformis/sciatica and PT has great stretches to help get it back into joint and to strengthen glutes, hamstrings and that pesky muscle. Dr Jo has you tube videos, and Two Guys Chiropractors have a good explanation. I do cat/cow/child/cobra yoga, piriformis stretch, clamshells and others for sciatica from PT. I have some hypermobility (another commonality) that is on the Beighton Scale, so hip/back/TMJ issues are common, but manageable. There are specialist PTs for this. Basically, chasing symptoms, as you might gather. Tension headaches could be TMJ; get a mouthguard. There are moves to relieve that, as well. I like calcium/magnesium, sublingual B-12 (also helps with low iron) and D3 to help keep looser and stop cramps. Be sure you hydrate, and eat enough. This and electrolytes really help avoid brain fog! When we feel ill, we eat less and that leads to another set of issues. Salivary gland is Sjogrens, usually. You can massage your cheeks, activate saliva with lemon drops; make sure you brush 2X day, use ACT mouthwash to prevent bacteria and waterpik to keep gums healthy. I have had two infections of the glands, and the Dr should give you penecillan or clindomyacin: go in right away as it gets horridly miserable quickly. For tingling, could be impinged nerves. Look up Paresthesia on webmd. I have found THC/CBD tincture (under tongue) helps at night. The Lupus Handbook might have ideas for you, AIP diet might help and here's a good site that has info about all of this: mctdfoundation.org and we are also on Facebook (Mixed Connective Tissue Disease) for practical ideas. This is a RARE condition, and most of us have been on the journey for years: ignore any lifespan information as it is old.

It is a post to be read many times. Very interesting and useful

I personally can’t tolerate a massage in my legs or back. It causes me to experience terrible pain. I cannot have my fingers stretched as manicure people do either My knuckles hurt so much that the first time they gave me that massage I screamed since I was not aware it would cause so much pain in my knuckles. I now ask to skip the massage. I used to LOVE getting massages. Used to get them with my daughter as special treats
What I do enjoy is meditation with a pretty good App : Inside Timer
Thank you for the good info
I also experience severe dryness in mouth, nose and eyes but I have positive aSS antibodies without anti SSA so they can’t “ call “ it Sjogren’s but I do suffer the symptoms
I carry lip balm and eye drops in my purses and keep them on my night stand to use them many Tim’s a day
Systain with no preservatives and Burst Bee extra moist

Apologies it is Sistayne

Hello @kenyalama, there are many Sjogren’s sufferers who are SSA positive. Sjogren’s Advocate provides a lot of information geared toward patients and providers - https://www.sjogrensadvocate.com/post/do-you-have-antibodies-on-your-blood-test

I have Sjogren’s caused peripheral neuropathy, intense back pains, and other muscle and joint pain, along with other symptoms.

Thank you for your comment Athenalee.
I actually only have anti SSB with NO anti AA so doctors tell me I that true Sjogren’s patients must have positiive anti SAA not the BB that I have
I also suffer from severe gingivitis and mouth sores, coarseness on and off but they refuse to diagnose it
I feel frustrated lately
Doctors never deny my symptoms, my body shows abnormalities and MRIs etc show abnormalities but my serology is normal except for the Anti SBB antibodies and doctors are puzzled
I can’t walk because of severe pain
Typing is now hard because of small nerve neuropathy. I type with the side of my index finger
The other abnormality in my blood was very high iron levels and my PCP says it’s lab error
I will have it done again in a few months
My neurologist ordered scoliosis test
What else ?
I try very hard to get out of bed every day but I do and I smile for family and friends and I still live alone
I also have a pain pump for trigeminal neuralgia. The tip of the catheter ends in my brain and I still have pin and needles in my right cheek and electric pain in my right eyebrow but I can speak now and the pain is tolerable
I feel terrible sharing all of this it’s too much and I apologize to all of you but it feels good to vent

Thank you again! I just read entirely the link you sent me
That is ME!! Including the robes with my veins! Swelling and hurting and bursting leaving bruises !
And yes my rheumatologist is only looking at my serology although I do have tge anti SSB etc
Last time I saw him he was dismissive to say the least. He even stretched my appointment to four months, did not want to drain the fluid from my knees ( yes both swollen, painful with Baker Cysyts each .
Now I know! Not see how to approach him!
I am on a Medicare advantage plan
I will go to bed a bit less guilty today. I know I am not making any of it up.
Thanks a million Shigren’s advocate
By the way the American Assiciation of rheumatologicals diseases is also strict :
It is not Sjogren’s without the anti SSA but I know what I feel and see and feel! in my own body
Thanks a million again

I was diagnosed with Sjogren’s with high SS-B antibodies, no SS-A, positive for ANA-direct (anti-nuclear antibodies). Went on hydroxychloriquine right away, which had helped my muscular skeletal pain.

Perhaps you can find another rheumatologist.