Sjogerns & tooth ache in my arm!

[Dani83]

Hi, im new & im so hoping someone can help x so back in July I started to feel really unwell achy all over, stiff toes & fingers. Tiredness & fluy symptoms Felt like it was never ending. Most mornings when i got up it felt like i was constantly walking on sand. I just couldnt get going. Ive had these symptoms for years but this time everything just seemed to be geting worse. Im 32. On top of this I have what I can only describe as toothache in my arm. Everytime i move my arm i feel like a cat is scratching my veins. (im right handed). It started off in my wrist & now it feels like the pain keeps travelling back & forth from my elbow to my wrist. Im of sick from work at the moment i do office work. I cant open a can of soup, put the plug in the bath. Open a botte etc etc. This pain is just awful. Some nights I get sharp pains feels like electric shock down the sides of my body. Tried everything over the counter, Doc prescribed pregabalin & Co-Codamol. This took edge of a bit but just made me so sleepy & clumsy. Nerve conduction study come back as problem in C7 - C8 area. But cervical MRI showed nothing wrong. I feel like I've tried everything im absolutely exhausted chiropractor (thinks its bursitis) reflexologist (thinks its to do with neck). I was convinced i had lupus or RA cause of my symptoms Finally got to see a rheumatologist and was diagnosed with Sjogerns - he has put me on hydroxychloroquine & gave me a steroid injection in the bum didnt do anything for me tho. He said the arm pain could be cause everything is inflamed. This has been the longest 7 months of pain & i do feel like im never gonna get well again. I no i have a diagnosis now but i just feel numb. If anyone could give me any advice i would really be greatful. ps sorry this is a long rant X

[Matalow]

A lot of your symptoms ring a bell. Suggest / query PsA to your medics. You can suffer from this even without presenting with a rash.

I also was in limbo with misdiagnosis for a few years even to the point of having part of my thyroid removed.

Hope you get some help.

Regards Mike

[Dani83 in reply to Matalow]

Aw thank you. I will do. It really is horrible not knowing whats going on with your body.

[nomoreheels]

Hiya Dani83 & welcome. You do sound as though you're unsure exactly what you've been diagnosed with despite the investigations & that can be helpful in coping with what you're coping with I've found. Some of your symptoms sound rheumatoid related, tiredness & flu-like, stiffness in fingers & toes but generally you'd also have inflammation. Have you had any blood tests, for Rheumatoid Factor or or anti-ccp, or any for inflammation ESR or CRP for example?

I may be way off base as I don't have Sjögren's but I thought it generally affects the eyes & mouth, neither of which you mention & often though not always secondary to another autoimmune condition. As you describe your other issues it seems less likely it's primary but no firm diagnosis, odd given your description of other issues. I'm sure if I'm wrong someone more knowledgeable than me will say but it's as I see it.

The hydroxychloroquine, I don't know if that's prescribed for Sjögren's, was it not explained why it was prescribed? You don't say when you started taking it but did your Rheumy explain that it can take take to build up, it is not a quick fix I'm afraid. It can take up to 12 weeks but you may notice subtle differences before.

Seems to me you need clarification to go forward from here. What I'd do, if you didn't receive a copy of the report, is make an appointment to see your GP & discuss your Rheumy's findings with him/her.

Sorry if my thoughts aren't particularly helpful!

[darb1]

Hi Dani,

I have had Sjogren's for 16 years. I am 67. I always questioned if I really had it since my lip biopsy came back as inflammation. (Do NOT do a lip biopsy if they offer one as it botched my lip and I bite it often and am aware of it every day.) My Rheumy put me on Plaquenil (Hydroxychloroquine) 200 mg. 2 x per day. I sometimes cut the dose in half as I wanted to be out in the sun and it would give me a rash. I also have Fibromyalgia and ache head to toe a lot so it is hard to know what I going on. Nomoreheals is correct that Sjogren's usually gives you dry mouth and dry eyes. Mine is primary Sjogren's. If you have another disease process (like RA or Lupus) it could be secondary for you. Ironically, I went to Cleveland Clinic this week because of frozen legs and also severe sciatica and left leg pain (like a tooth ache). They ran the nerve conduction studies and while I don't have an exact diagnosis on that, it all stems from damaged discs L4 and S1 (I think). The doctor questioned WHY I was on the Plaquenil. I guess I figured that is the first line of treatment for Sjogren's. Whatever I have, I ache head to toe and have my good days and bad. I more wonder with my latest developments of pain what they can do for me. I am worried about it causing damage if they don't do something soon. On my next visit, I will question my Rheumy about being on the Plaquenil. I guess that is "supposedly" suppose to help with inflammation. She thinks I am not that inflamed and yet at times, I feel like I am on fire. Get many bakers cysts behind my knees, swelling around my knees and, more recently, pain in my elbow and wrist for which she gave me a steroid injection saying it was tendonitis. Go figure . . . Much luck to you in your search for answers. Carol

[Dani83 in reply to darb1]

Thanks carol. Wow i wont do a lip biopsy if asked. Sorry your in pain. I cant under stand how the nhs can let people be in so much pain & say see how you go! I hope you get answers to keep me updated. X

[Dani83]

Hi, thank you for replying. ive had blood test by doctor. RA factor low he said 48. (This means nothing to me).Seeing a rheumy at university college hospital in london. He done bloods and RA was positive. I had RA when i was about 10 years then it went away. Said it was juvenile RA. Also runs in family. Ana, Ena, RO,LA all positive. Esr was 7. All my symptons get worse when im due on PMT. (suffered for years). He said there could be a connection. Rhumy said its not RA cause i dont have joint damage & it doesnt feel inflamed wen he checks. He said cause RO/LA were positive thats why i have this diagnoses. Its all very long & confusing isnt it. Yeah he did say that drug can take up to 3 months to work to which my reply was so 1 day am i just going to get up out of bed & start doing kartwheels. Lol. He said its all trial & error 😐im sooo glad i have found somewhere to rant thanks guys xx

[darb1 in reply to Dani83]

Yes, Dani, it is all VERY confusing. I would be asking if juvenile RA can resurface later in life. My Rheumy swears I'm not inflamed -- I swear I am! I am in Florida. My sister thinks I should go to John Hopkins in Baltimore, MD where they have a Sjogren's unit. Not sure that would do any good either. Just trying to keep moving on with life. Best of luck to you. Write me any time. Warm hugs, Carol