Few years ago I was diagnosed with sjogren's syndrome. Since that time, except regularly "dry" symptoms, I didn't have any other new. But a month ago I started to feel numbness and tingling in my fingers. I am about to go to a doctor, but before I do it, I would like to learn more about this symptoms. Could numbness and tingling be related to sjogren's syndrome?
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I think that it can be related. I have sjogren's syndrome myself for some year now. Last year I got similar problems like you. I wasn't sure whether they are related to my basic disease or it is something else. After some tests doctor told me that they are symptoms of progress of sjogren's syndrome. Maybe this is what is happening to you, so you should check this.
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I was diagnosed with Sjogren's last year. At the beginning of 2008 (January) I had a cold/flu. When the symptoms of that were gone, about a wekk later, I developed tingling and what feels like vibrations in my feet and legs below the knee. Although it was not painful, it did keep me up at night so I went to see my family doctor. He ran some blood tests and when my ANA was elevated, referred me to a Rheumatologist. The Rheumatologist ran more blood work and some nerve conduction tests (he has yet to give me the results). Based on the elevations of other pieces of my blood work and my very dry eyes, skin, mouth and hair, he diagnosed me with Sjogren's. He began me on Methotrexate, but I was very apprehensive about taking it since it is so harsh and I am only 36 years old. After about a month, it started to affect my personality - I was very sad and angry. Although my doctor said this was not from Methotrexate, I found many blogs from others who experienced the same, so I quit taking it and decided to live with my symptoms.
Well, close to the beginning of this year, I had my first flare up that involves my arms. Everything below the elbow to my fingertips is numb, tingling, burning and painful. The pain is especially in my hands, but my entire arm below the elbow feels like it is vibrating very mildly. It is extremely unnerving, especially since there does not appear to be anyone who can verify that Sjogren's is the cause. It is scary because I am not sure if there is some other problem. Because of this (I am on flare-up #3 for 2009 - they usually last a couple of weeks) I am going to make an appointment with the Rheumatology department at the Mayo in Jacksonville (I live very close to there). I will let you all know what I find.
Well, close to the beginning of this year, I had my first flare up that involves my arms. Everything below the elbow to my fingertips is numb, tingling, burning and painful. The pain is especially in my hands, but my entire arm below the elbow feels like it is vibrating very mildly. It is extremely unnerving, especially since there does not appear to be anyone who can verify that Sjogren's is the cause. It is scary because I am not sure if there is some other problem. Because of this (I am on flare-up #3 for 2009 - they usually last a couple of weeks) I am going to make an appointment with the Rheumatology department at the Mayo in Jacksonville (I live very close to there). I will let you all know what I find.
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Hi there, I was diagnosed with Sjogren's about 3 years ago but I also have a positive RA (rheumatoid) I suffer from dryness in fact my eyes were so bad I had plugs in both my tear ducts and used visco tears every 5 minutes for two years. It was a very hard time in my life, no make-up constanct p***y eyes and the aches, so severe, I was on Diclofen and maleria tabs which really helped with my pain.
3 years later and my dry eyes are under control and I can wear make-up. I am not on any meds at all, which was my goal but the aches are still a part of my everyday. If I sit more than 5 minutes it is very hard to just get up and go it takes me a minute to straighten up and walk. I am 43 and feel as though I am 83.
I have recently had a lot of breast pain on the right side and was thinking OMG breast cancer. I am going to breast clinic next week. I have been reading up and now I think it may be linked to my sjogrens.... possibly even my RA? I have read caffeine is a culprut of breast pain, interesting, I do drink a bit of coffee. My pain comes and goes but I am unsure of its origination. I think it could be in my rib? It all just hurts. ugh. Anyone else experience anything like this?
On another note, I used to get tingling in my wrist so bad at night that I got used to placing my hand on my bedside table to keep me from bending which would wake me at night becasue it would be numb. I have not had it for a while now. So I think its also a feature of Sjogrens. Keep your wrists and elbows in a relaxed postition so they dont go numb.
Lisa
3 years later and my dry eyes are under control and I can wear make-up. I am not on any meds at all, which was my goal but the aches are still a part of my everyday. If I sit more than 5 minutes it is very hard to just get up and go it takes me a minute to straighten up and walk. I am 43 and feel as though I am 83.
I have recently had a lot of breast pain on the right side and was thinking OMG breast cancer. I am going to breast clinic next week. I have been reading up and now I think it may be linked to my sjogrens.... possibly even my RA? I have read caffeine is a culprut of breast pain, interesting, I do drink a bit of coffee. My pain comes and goes but I am unsure of its origination. I think it could be in my rib? It all just hurts. ugh. Anyone else experience anything like this?
On another note, I used to get tingling in my wrist so bad at night that I got used to placing my hand on my bedside table to keep me from bending which would wake me at night becasue it would be numb. I have not had it for a while now. So I think its also a feature of Sjogrens. Keep your wrists and elbows in a relaxed postition so they dont go numb.
Lisa
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I am almost 51 & have Sjorgren's too & have less pain after four months of taking hydroxyl
Oroquine. I have found that a heating pad at bed time really helps with the pain I have in my back, neck, shoulder & hips. I use one several times during the day. I also get bouts of brain fog & especially get numbness & warmth in my right foot at night mostly. Moving it up and down helps. It has gone from a few toes to half way up my ankle in the last few months. I have had numbness in my extremities as long as i can remember. I have the lower eye plugs & that has really helped reduce the use of artificial tears & are well worth doing. Yoga seems to help a lot if it flows & there is not a lot of held poses. I also walk 20 to 25 miles a week which seems to help with the fatigue & pain. I try hard not to eat wheat as it is definitely a trigger food for me. I do eat glutton foods & they do not affect me. I was just diagnosed in September, but have been searching for answers for a good ten years & have been told by more than one doctor over the years that I had nothing wrong with me & that I was making up stuff or was mistaken so go to a rhumatoligist if you have some or all of the symbols as many Gp's just don't know. I had borderline Ra reading off & on since my early 20's & finally decided to go ask someone who actually knows what can cause this.
Oroquine. I have found that a heating pad at bed time really helps with the pain I have in my back, neck, shoulder & hips. I use one several times during the day. I also get bouts of brain fog & especially get numbness & warmth in my right foot at night mostly. Moving it up and down helps. It has gone from a few toes to half way up my ankle in the last few months. I have had numbness in my extremities as long as i can remember. I have the lower eye plugs & that has really helped reduce the use of artificial tears & are well worth doing. Yoga seems to help a lot if it flows & there is not a lot of held poses. I also walk 20 to 25 miles a week which seems to help with the fatigue & pain. I try hard not to eat wheat as it is definitely a trigger food for me. I do eat glutton foods & they do not affect me. I was just diagnosed in September, but have been searching for answers for a good ten years & have been told by more than one doctor over the years that I had nothing wrong with me & that I was making up stuff or was mistaken so go to a rhumatoligist if you have some or all of the symbols as many Gp's just don't know. I had borderline Ra reading off & on since my early 20's & finally decided to go ask someone who actually knows what can cause this.
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I had numbness on my left cheek, went to a neurologist and my MRI didn't show anything so my doctor referred me to a Rheumatologist - Blood test shows i have sjogren's disease.... the numbness did not go away. 2 year later i have numbness on my whole face, right hand and right legs. Everytime i go to other doctors to see if there is anything that is causing my numbness aside from sjogren - they think i am crazy that i am making this up. I am a tax accountant and my job is quite streesful, my primary doctor prescribed me Xanax and muscle relaxer, she thinks i am having numbness due to stress. I just look online and they offer herbal medications for Sjrogrens. Is anybody on medication for the sjrogren's? By reading some articles through the website. It seems like sjrogren is the main reason for causing the disease and the medication is to cure the disease that was caused by sjogren. which means there is no cure for Sjogren?
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I'm 25 and just got diagnosed 3 days ago. They put me on med, one pill a day that slows down s.s. I'm scared!
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Yes I to have had the bad pain in my upper rt side of my breast, feels like it's in my ribs. went to the ER, they found nothing, but gave me a prescribetion torodone or some name like that.But wherever the name it took away the pain until now ,which is three months later.And I too also have the tingling in my fingers in now while I,m awake.
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I have had sjogrens for about 10 years and RA for about 3 years. I have been on methotrexate and it has really helped. I also take B vitamins since I started getting numb hands at night. I also get tingling in my chest. The first rheumatologist I saw referred me to a psychiatrist as I am negative for most tests. The second agreed that I had SS and RA. Luckily I am married to a doctor as the methotrexate saved my joints and my doctor friends had me on it early. Unfortunately many doctors are ignorant
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I have very similar issues!!! I have sjogrens and familiar with vibrantion sensations and numbeness
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I have lived in France for 14years .Age 73.was very active till 2010 when I had sudden pain ,tingling in arms hands &legs .Bouts of extreme fatigue. After blood tests I they found I had Scleroderma / Sjogrens . After many trials of Meds I take 10 different types of tablets . plus methotrexate injection. I honestly can't say they help much . I can just about get about but feel trapped & misunderstood. Having read that others suffer similar feelings helps . I keep hoping something will turn up to help all of us. Good Luck ,keep fighting don't let this awful illness beat you.
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I have had sjogrens for about 7 years....I am 64......I do not take any meds.....around 2 months ago the tip of my middle figure started to feel a little numb....it has now moved down the finger. The side of my big toe on my right foot did the same thing around 5 years ago.....so.....just one more thing to deal with. I am a member of the s s foundation......also there are tons of s s groups on facebook....whenever I have a question I go to Facebook...or the foundation......
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I have been diagnosed with Sjogrens for about 5 years now and I have a weird feeling on my face. It’s not numb but it feels like you have a facial mask on that you never took off. It doesn’t hurt but is very frustrating. It started on one side and spread to the other and covers the whole face. Neurologist and I are now trying different seizure meds to see if that might be what is causing the problem. I had been on tegretol for years. We just tried Fycompa and reduced the feeling in one side for a few weeks but it came back and I had to come off of med because of side effects. I am not trying another med.
I keep searching for others who a similar problem and this board seems to have a following.
I keep searching for others who a similar problem and this board seems to have a following.
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Lisa, I wonder if your problem with getting up after sitting just a few minutes could be polymyalgia rheumatica. What you describe was happening to me, as well as waking up due to extreme pain in the muscle in the front of the thighs, both sides. It felt as if I was having severe cramps but there was no cramping, just the pain, always bilaterally. Note that I am a very deep sleeper. It wasn't until I was filling out a symptom form that I realized the oddity of the pain being just the front on the thigh. A relatively short, low-dose round of a commonly prescribed steroid relieved the problem for me, and once resolved, the steroids are not needed. I do have flare-ups from time to time, but not often. Finding the cause was a great relief but it was a mystery to me! Further reading on the condition showed it is often found in people who have certain other autoimmune conditions. Polymyalgia rheumatica can be diagnosed by a simple blood test (I believe it is inflammation makers that are looked for in the blood.) I hope this helps with your problem.
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Your symptoms sound so much like mine. Being somewhat unusual, I didn't think I'd ever get answers. Did you ever learn what is causing the pain in your right breast?
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