The Australian Sjögren's Syndrome Association
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Nonstop pain

How long will I have to put up with my hip feet ankle knee hand and wrist and arm muscle and joint pain. It never stops. Taking Panafon osteopath and oxycodine. The dr hesitated to give me the oxycodine but I must have it to get through days when I have things to get done. I treat them like gold so I have a bareable day occasionally. I hate it. It's been going on for months. I can't drive sometimes as my heels are painful. I am applying for disability but not hopeful as it's tough to get. If they can find me a sitting job where I don't use my hands very much and don't have to focus and don't have to have a good memory I would be happy to work. The pain makes me miserable. Somebody please tell me it will be ok. I am on plaquenil and it seems to have only helped my fatigue and keeps me up at night plus the pain doesn't help. I've been sleeping on my back forever and now that's hurting as well. Two nights ago I was awake all night. Money is running out and I am stressing. Help

9 Replies

So sorry you are in such constant pain. I can relate because I'm in lots of pain today too and my legs and arms feel on fire with it. I'm guessing it's the Fibromyalgia aspect of Sjögren's but I was originally diagnosed with RA. Do you get blood tests done at all and do these reflect your pain I wonder? It might help to know if it's inflammation (ie inflammatory arthritis/ RA) or Sjögren's where treatment options are concerned. If it's inflammatory arthritis then you may get more help from having Methotrexate added to the Plaquenil. If not then a pain medication such as Pregabalin might be more useful perhaps? There are other options some favour such as going gluten free and supplementing or trying a vegan diet. These are free options and some swear by diet and others by accupuncture although neither have helped me I have to say.

I can't help otherwise but I can at least sympathise.


My Dr says I have SS cross over Lupus. My ana is negative. My RF is high and another blood test is positive. Im still learning about my disease and don't understand all the blood tests etc. I read about them but don't really understand them and then I cant remember. I have to take my daughter with me because I cant retain the information. My memory is shot. I will write down the name of the pain med and mention it to the Dr. Thank you for replying to my post. The only one who understands is my daughter. Friends and family don't seem to give much thought or inquire about my illness. Sometimes it seems its all in my head. I wish it was. They say you are looking good, because ive lost weight and how did you do it. I would love to be heavier and feel normal. I am writing this at 3.30am because I cant sleep. That's two nights in the last 3 I have been up all night, even with sleeping tablets. Its very depressing. I have to keep thinking there are heaps more people worse off than me. Thanks again for the information.


I'm the same - day three following total insomnia. But I am lucky I don't have the brain fog you describe. I did have to stop a planned day out and come home to bed today - where I just lay all afternoon enveloped in pain. I am an artist so I try to visualise it and this helps.

I feel so ill and in such pain that learning about the science and detaching myself from my pain ridden body has become my way of coping and a new way of life.

I actually love it when my symptoms match my blood results - it satisfies me! I love being able to look my doctors, friends and family in the eye and defy them to say it's not real. I have the evidence in black and white to say it is real and this really helps me cope with pain and illness.

This approach is not a cure of course and I can't tolerate any pain meds so pain is very difficult to bear. I guess I'm using mindfulness to detach myself but knowledge helps. I am on an immunosuppressant drug called Cellcept because Plaquenil gave me anaphylaxis. I don't think it's helping me much but perhaps it is more than I know? The fatigue is awful though. I'm getting my hypothyroidism monitored to see if my dose of thyroxine is the problem as I suspect. I'll be delighted if it is because an increased dose should help!

However I do think it's all about how we cope with the lemons we have landed. Some people just can't function because of their pain. Others, with equally severe active autoimmune disease, just don't have the same heightened sensitivity to pain or somehow manage to endure it better. There's no right or wrong way. It is what it is. I'm one of the lucky ones I guess.

But I'm thinking that possibly learning about the mechanisms which trigger or cause your pain might help you to find treatments and methods to manage it more effectively? And also be able to discuss how you feel with your doctor - who may be able to offer you medication or suggest alternative methods or pain clinic perhaps. That's all I can suggest really.


Ps if your RF is high then you may have RA to blame for your awful pain - in which case your doctor could offer you other drugs to target this as Plaquenil may not be enough? X


Yes that is very informative, thankyou. I do get painful eyes, and dry eyes, sometimes worse than at other times, I get dry mouth but have only had a cracked tongue and really dry lips, and no taste and stinging mouth once. I always have a dry mouth though and often get stringy stuff. yuk. My nose is very dry and I suffered an upper respitory infection for 5 weeks, couldn't shake it. Excuse the spelling but I havnt the energy to correst it. lol. I see the Dr on Tuesday and I will have a lot of new questions to ask him. Thanks for your reply and wish you all the best. xxx


When I went to see him for the first time he said, I can see by looking at you that you haven't got RA"" >??????/ I thought I had it that's why I went to see him. Now I am puzzled. The plaquenil has only helped with the fatigue, Didn't sleep at all last night. Anyway I have an appointment this Tuesday and I will ask more questions. Thanks for your reply and hope you are doing well. xxx


Well I wouldn't say "only helped with fatigue" to most people with Sjögren's. Fatigue is probably the most debilitating symptom there is - it's stops us living any kind of life at times. And you can be thankful at least that you are tolerating Plaquenil - I couldn't and have to take much stronger drugs - ugh! Yes RA does tend to show up as hot,"boggy, swollen joints - especially in hands and feet and knees. So you may have the Fibromyalgia type of pain so often associated with Sjögren's, Lupus and RA instead. I'm doing well in spirit but my body feels total pants just now - has done for a while. Hey ho onwards and upwards! X


So sorry to hear that life is awful for you at present, Lorraine.

As Twitchytoes says, Pregabalin may be an option for you. I was started on it back when I was given a Fibromyalgia diagnosis (even though I had seronegative, at the time, Sjögren's all along) and not only did it make my neuropathic pain more tolerable, it helped me sleep.

Initially the doctor started me on a morning and night dose but the morning dose made me too dopey and ataxic (that means unco-ordinated) so he changed the dose to be all taken just before bed and what a difference it made to my sleep. Of course that could be just me, as I had never previously taken any sleeping tablets, so I may be more susceptible to the effects of Lyrica (Pregabalin).

Currently I am on 300 mgs of Lyrica at night and fairly recently started a morning dose of 75mgs. When I recommenced this morning dose recently I was sceptical as to how I would cope. The doctor recommended me to each week grade up the morning daily dose by 25 mgs until I started to feel the familiar dopeyness and ataxia starting, then drop back to the previous 'unaffected' dose. So 75mgs is where I am now, (after reaching 100mgs then needing to wind back).

I also these days take Tramadol 50 mgs twice per day. I don't like it or the stigma attached but one has to do what one has to do to optimise ones quality of life.

**** I do need to get around to trying the Black Seed oil that Beverley recommends (even though I believe it tastes horrible). Wouldn't it be just wonderful if it helped as much as it has helped her, then I could throw away all these pharmaceuticals?


I feel so for you. The hand and foot pain is very severe for me as well. I have to use a wheelchair outside my home. It is possible you are in the early stages of Sjogren's neuropathy. Do you see a neurologist? I recommend that to all the Sjogren's patients I know. I had to shop around a bit but found one who also acts as my pain doctor. You need the narcotics. I had very little quality of life prior to finding the right combination. I can offer the following to help in the meantime. I bought carpal tunnel sp;ends for my hands, which really help. In terms of my feets, I have had less luck. I have two types of neuropathy, which complicates matters. I find using a good alchohol free mousterizer soothing and I gently massage it in, when hands permit, which gives some relief. I cannot wear socks, but when I could I searched for the softest I could find. This was very helpful. I still wear only shoes with memory foam insoles and soft, good arch support.

This will sound odd, but I try to regularly stretch my toes. I sit in a chair and put my toes in a normal bent position on the floor. I then press down, including the balls of my feet. Hold for 15 seconds. Do three times on each foot. I do not press past pain. It has provided the most relief of anything I've tried. I also stretch my Achilles' tendon. Lean forward with both hand against a wall or hold the back of a chair for balance. Step forward starting with your right foot, knee bent. Your left foot should be behind you...knee straight (if you've ever seen a sword fighter's lunge, that's the position, but only as deep as you can go without worsening pain). bend your left (back) knee until you feel the stretch behind your ankle. Keep your ankle straight. Again, do not bend so far as to trigger too much pain. Hold for 15 seconds. Do 3 times on each leg. You can add one rep per week. It's very important to start slow. You can add 5 seconds every 2 weeks. Once you cab-n easily do 15 reps of 30 seconds each, do these excecisex2 times a day.i also have excercises for my hands, but let's stick to your feet. Trying to do too much too soon can trigger the flare up from hell. I truly hope this helps. I'm on Facebook Messenger as smarmonk. Ditto for Apple. My FB name is Sharon Kaczorowski. I've been dealing with this for at least 22 years so have a few other survival tricks!


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