feeling defeated

As far as I know, the only auto-immune disorder I have is Sjogren’s, although I have osteoarthritis as well as degenerative joint/disc disease. That’s enough to keep me busy. As soon as I was diagnosed I went to a rheumatologist who put me on hydroxychloroquine which has helped with the arthritis and hopefully will help slow the progression of the Sjogren’s symptoms. My pain levels fluctuate and I find stress is my biggest trigger. Luckily I have an able-bodied husband who helps me with everything.

Thx again for your answer… I have a very able-bodied husband who is absolutely zero help so you are lucky and I’m sure you deserve it as well.I have Sjogren’s along with the CIDP, also asked you arthritis, and degenerative disc disease which I think just comes with the territory. They took me off the clock well as I was originally on it for Sjogren’s and said it proves not helpful but I don’t know why they didn’t keep me on it for the arthritis because it’s painful isn’t it? MOBIC, The brand name of meloxicam is The first thing I was giving given for Sjogrens; it’s an anti-inflammatory made an immediate difference at 1st diagnosis. The generics did not work. I was given plaquenil also… to suppress immune more than for arthritis (they have since discovered in studies does not work). I just stopped the plaquenil Because of the potential damage to your eyes with macular degeneration, but now with the OsteArthritis… you’ve given me a good question to ask my Rheumatologist thank you.

I find Pain fluctuates with most of these diseases. I also have chronic migraines so once that begins all bets are off so to speak!

Sorry I don’t understand this: “They took me off the clock well as I was originally on it for Sjogren’s and said it proves not helpful but I don’t know why they didn’t keep me on it for the arthritis because it’s painful isn’t it?”

I am also taking Meloxicam 7.5 mg daily. It’s a definite help!

So sorry! Voice to text not perfect, and difficult to type on a touchpad. I meant to say my Rheumatologist stopped the plaquenil due to the reasons I stated. I need To proofread more carefully.

Hey. I have been dealing with residual Lymes body aches and pain for awhile. What I found to help immensely was a combo of supplements and vitamins. Omega 3 and 9, iron, magnesium, potassium, and naproxen sodium. Bulksupplements.com has been a great place for Supplements. They have catagories now for specific needs. My wife and I use Lions Mane mushroom extracts. Look into Turkey Tail mushroom. Cancer.gov has some more info on it's healing properties. Hope this helps.

@noanswers I don't have cramping. I am not sure if I have muscle twitching but I have noticed when I hold things in my hands sometimes my hands jerk. It is weird. The only burning pain is in my left hand and it comes and goes. I don't have cramping. I have not been on the statin drug for too long. I think in Dec it will be two years. I went off of it for a few months. My Dr. started me on 20 and bumped it up to 40. I have a nurse friend whose sister is also a nurse. She woke up in achy pain of a 9 on the 10 scale. She has been taking the statin for 20 years. She stopped it and went to some Docs. After she stopped it her pain went down to a 1. They started her back on a low dose and the pain came back. I am waiting blood work results from a hematologist. He says he is not worried about the M. He said if it were high he would be. Or if I had some of the other immunoglobulins that were low or high then he said he would be worried. But I read up on the M but of course I am not a doctor. My M was 39. I think what is more worrisome to me is what comes next. My heart rate is concerning also. After I started the pricks in March of this year I woke up in April with a feeling in my chest. I honestly thought it was palpitations going wild. I have had them here and there since I was young and was checked out. It blew my mind when the cardiologist said my heart rate was 184. I think it is related to the nerve problem. I will see the Neuro in November and I will discuss that with him and also the statin drug. I will bring that up. I was planning on getting a referral to Mayo but that would be a year away for an appt. That sucks. If I get any answers I will share them with you. I thank you for sharing. I know how frustrating it is not getting answers. It is a slow time making the appt. finally seeing the Doc then waiting for tests and answers. You are the first person I have met with the pin pricks. You don't have them in your eyes do you? The neuro ophthalmologist said they are related neurologically.

It is hard to stay positive without sleep. My GP helped me with that. I really can’t say enough about having a good GP doctor to oversee things. When I go to all the “ologists” I also have them send their summaries to my GP. That way he has everything. I have been on a statin for decades-currently 20mg-. All my doctors took me off them for two weeks and I decided to go longer 1month. It made no difference as far as my symptoms go-however my cholesterol was terrible. When I went back on the statin my doctors could not believe how quickly my numbers went back to within the normal range. My hematologist is not concerned about the low IGM either because all my other tests were normal. Still suffering daily with full body stinging-burning-faciculations-pains during cramping and oh the ringing in my ears😪 Stay strong and give yourself credit for any little thing you do during the day.-even if it’s just brushing your teeth or writing a comment here. There is someone who can’t even do that-Feel bettter❤️

The neruostimulator is embedded, Electrodes are placed near the origin o f the pain and the generator and battery are placed on one of your buttocks. My spine surgeon recommended the device rather than more surgery or opioids. Battery is supposedly good for ten years. Insurance company requires a one week trial which includes the buried electrodes and a generator taped to your body. You receive and iPod with the device app on it so that you can adjust the level of the pulse. Experience shows that finding the right level and leaving it alone works best.

I encourage you to look at the website I mentioned before
https://www.smartpatients.com
There are multiple resources you can download to share with your doctors if they aren’t familiar with Sjogrens treatment protocols.

Many people are on hydroxychloroquine for decades before any problems arise with the retina and my rheumatologist has me see an ophthalmologist every year to make sure there are no problems with my eyes. I’ve been taking it for less than 2 years.

Of course you may have had some problems which is perhaps why the drug was stopped. This drug is the first line of defense for Sjögren’s. It slowly builds up in the body and you can continue to see improvements in muscular skeletal pain for up to a year. It really improved my symptoms.

I hope you can get some relief!

Thanks to all the encouraging and information! I am having Botox injections in my calves Friday for the cramping I will remain hopeful!