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Bren24 11-22-2008 11:13 AM

Burning skin associated with possible sjogren's syndrome
 
I have very dry eyes (eye hospital cauterised puncta which has helped a bit), burning soles of feet but the worst thing is burning skin (like sunburn) on the entire body, especially arms and legs. Does anybody have anything similar to this? I tested negative for SS antibodies.

jbb2 01-13-2009 12:02 AM

Re: Burning skin associcated with possible sjogren's syndrome
 
I also have burning skin. My face, my arms and my feet are usually very red. I am also very warm and cannot tolerate temperatures over about 65 degrees or I begin feeling like I am going to pass out from the heat. I have the symptoms of Sjogrens, like the dry eyes, mouth and skin, but so far my blood work does not show anything. Right now, both of my salivary glands are so swollen and painful, I can't even touch a pillow without taking a pain med. I look like I have half of a grapefruit in one or both sides of my face, depending on what time of day it is. I have been running a temperature off and on this week, and all I've been told is that I may have an infection in the glands and I've started antibiotics. Sure wish I knew what was going on! I'm feeling sad today, because the Dr. just said there isn't anything they can do for me.

Bren24 01-13-2009 10:36 AM

Re: Burning skin associcated with possible sjogren's syndrome
 
Dear JBB2, thanks for your reply. I am not a medic but your symptoms sound very much like Sjogren's to me, especially the swollen salivary glands. My mouth isn't a great problem and I just need to keep sipping water. I find the skin the hardest thing to tolerate as it is hard to find any clothing that is comfortable to wear and seams on clothing chafe the skin. I, too, have had lots of bloodwork done (last week, in fact) from a rheumatology and neurology point of view and am awaiting the results but I am not hopeful. I find resting makes things settle down a bit but this is not always possible. Are there any Sjogren's Syndrome support groups in your area? Other people with the disease often have knowledge and tips to give you. I wish you well and hope that you get a diagnosis for whatever it is or find ways to alleviating the symptoms.

shabbyanne 01-19-2009 07:31 AM

Re: Burning skin associated with possible sjogren's syndrome
 
I am being tested for sjogren's, but was tested and diagnosed with small fiber neuropathy last year. Burning skin was one of the symptoms I had. I take neurontin 4 times a day, and if I miss a dose, the burning immediately returns.

jbb2 01-19-2009 11:36 PM

Re: Burning skin associated with possible sjogren's syndrome
 
Thank you for telling me! I'm seeing my rheum. Dr. tomorrow. I'll talk to her about this, but I will also make an appt. with my neurologist.

jwolfbauer 06-14-2010 10:20 PM

Re: Burning skin associated with possible sjogren's syndrome
 
;)[QUOTE=Bren24;3801617]I have very dry eyes (eye hospital cauterised puncta which has helped a bit), burning soles of feet but the worst thing is burning skin (like sunburn) on the entire body, especially arms and legs. Does anybody have anything similar to this? I tested negative for SS antibodies.[/QUOTE]

I just learned about Sjogren's Syndrome. I have had this burning on the skin for sometime now. I also have dry eyes and dry mouth. I have not had any tests, what are the tests that have to be taken to see if a person has this syndrome?

Angie10 06-21-2010 03:15 PM

Re: Burning skin associated with possible sjogren's syndrome
 
Hi Bren,

I have Sjogrens but also have Fibromyalgia. When I'm in the midst of a flare I have areas of skin that burn and it kind of feels like sunburn down to the bone. I don't like to be touched and the clothing that touches the area becomes a problem. Has anyone tested you for Fibromyalgia? Many people with Sjogrens also have Fibromyalgia. Your rheumatologist would be able to diagnos the fibro.

Hope this helps!

Angie

jwolfbauer 06-22-2010 06:43 PM

Re: Burning skin associated with possible sjogren's syndrome
 
[QUOTE=Angie10;4270794]Hi Bren,

I have Sjogrens but also have Fibromyalgia. When I'm in the midst of a flare I have areas of skin that burn and it kind of feels like sunburn down to the bone. I don't like to be touched and the clothing that touches the area becomes a problem. Has anyone tested you for Fibromyalgia? Many people with Sjogrens also have Fibromyalgia. Your rheumatologist would be able to diagnos the fibro.

Hope this helps!

Angie[/QUOTE]

Thanks Angie. Went to see my doctor this afternoon and he is going to take the tests to see if I have Sjogrens and Fibromyalgia. He did give me Meloxicam to take for now. What medicine is good for this?

Angie10 06-23-2010 08:24 AM

Re: Burning skin associated with possible sjogren's syndrome
 
Hi,


For Fibromyalgia, medications like Cymbalta, Lyrica, Neurontin, Celexa, etc. seem to help calm down the painful flares that crop up under stress and other triggers. I am on celexa and thinking about going back on the neurontin. Try to avoid short term fixes because with fibro, the body only responds for short periods of time to medications such as vicodin, oxycodone, percocet, etc. and these drugs can make you dependent over time.

For the Sjogrens I am actually on injectable methotrexate because of the joint pain flares becoming so bad. Plaquenil is a great DMARD but unfortunately I am allergic to both the generic and name brand. Hope you can find medications that work for you and relieve your pain.

Keep us posted!

Hugs,

Angie

Stella 5 Gallo 06-25-2010 06:22 PM

Re: Burning skin associated with possible sjogren's syndrome
 
[QUOTE=Bren24;3801617]I have very dry eyes (eye hospital cauterised puncta which has helped a bit), burning soles of feet but the worst thing is burning skin (like sunburn) on the entire body, especially arms and legs. Does anybody have anything similar to this? I tested negative for SS antibodies.[/QUOTE]

Hi I also have sjogren's & recently had a burning skin attack after taking a single high dosage vitamin of niacin and a vitamin of beta carotene. I thought the back of my hair must be on fire so I threw water on my head & the heat decreased. I called a health help line and they explained that niacin can cause this type of skin burning sensation. By drinking lots of water I flushed it out & within a few hours all I had were red blotches on my thighs. I would suggest you check your vitamin pills.

Stella 5 Gallo 06-25-2010 06:27 PM

Re: Burning skin associcated with possible sjogren's syndrome
 
Hi I also have sjogren's & recently had a burning skin attack after taking a single high dosage vitamin of niacin and a vitamin of beta carotene. I thought the back of my hair must be on fire so I threw water on my head & the heat decreased. I called a health help line and they explained that niacin can cause this type of skin burning sensation. By drinking lots of water I flushed it out & within a few hours all I had were red blotches on my thighs. I would suggest you check your vitamin pills.

PrazB2JC 07-06-2010 07:46 PM

Re: Burning skin associated with possible Sjogren's syndrome
 
Angie, as a side note, the "burning sensations" you are describing could also be symptoms of RSD (Reflex Sympathetic Dystrophy), also called CRPS (Complex Regional Pain Syndrome). This is a nervous system disorder that usually affects part(s) of an extremity, the entire extremity, or both extremities, i.e., legs/arms. It can actually feel like hot coals are sitting on your skin. Anything that accidentally touches the area could make one scream in pain. I can empathize with your discomfort as I have RSD of both my upper extremities. Trust me, after searching for 5 years and visiting countless doctor's offices for a clear diagnosis, I realized that most physicians do not have a clue with regards to symptoms of RSD/CRPS. My diagnosis came from an anesthesiologist who heads a Pain Clinic. The relief of finding an MD who could actually equate my symptoms to a specific illness was like the weight of the world was no longer on my shoulders. PTL!

God Bless!
Sherry

Angie10 07-07-2010 05:47 PM

Re: Burning skin associated with possible sjogren's syndrome
 
Thank you, Sherry!

I have never heard of RSD. It make you wonder if sometimes doctors are quick to diagnose what we have without looking at all possibilities. Also, it seems like there are so many syndromes and diseases that overlap in symptoms that it feels impossible to attribute one symptom to one thing. I will look into RSD more. Thank goodness for pain clinics!

Hugs,

Angie

PrazB2JC 07-07-2010 11:04 PM

Re: Burning skin associated with possible Sjogren's syndrome
 
[FONT="Microsoft Sans Serif"][SIZE="2"][COLOR="Navy"][/COLOR][/SIZE][/FONT]Angie, please keep me updated on your condition – I, too, feel most physicians are "guessing" as they, themselves, are clueless regarding the characteristics of these conditions. They either don’t have the diagnostic tools, aren't properly educated in these areas, or are too lazy or disinterested to pursue any further research with regards to their patient's symptoms.

If you want to laugh, here are just a "few" actual comments made by doctors to me regarding my pain issues and all of the mental/physical anomalies that can accompany:

1) “It's arthritis - lots of people have it - you'll just have to live with it.” (Supposed reputable rheumatologist)
2) “Checking your records, I see you're on a lot of medication for a variety of different illnesses. I would be happy to refer you to an institution known for its great detox program.” (Hospital ER physician)
3) “Women your age just need some extra attention, especially during menopause. I think counseling would do you wonders! (Rheumatologist)
4) “Symptoms, such as yours, may be a hidden manifestation arising from your marital relationship. Is there any underlying tension or hostility between you and your husband? How is your sex life?” (Neurologist)
5) “WOW, you do have quite the list of "complaints" and I'm probably NOT the best physician to treat your needs. I can recommend a psychiatrist friend of mine. It’s good to have a professional to talk to”. (ER physician)
6) “All these medications mixed together is the most obvious cause for all your symptoms and so-called conditions". (on-call internist)
7) “After reading all of your prior reports and going over your test results, your symptoms do not fit the criteria for RSD. I think you need to find a different rheumatologist who can treat, what I believe is, arthritis.” (Johns-Hopkins University Hospital Specialist)
7) I saved the best for last, “I think you spend far too much time on the computer trying to find labels for every little ailment so you can come in here and present your own “self-diagnosis”. (This came from MY primary care internist five years ago – needless to say, that was my final visit to his office).

[B][U]Truth[/U][/B]: After finding experienced professional doctors who were educated in these specific areas, I was tested and diagnosed with RSD, Raynaud’s syndrome, and BPPV (Benign Paroxysmal Positional Vertigo); each carries its own degree of symptomatology. Today, I was tested for Sjogren’s Syndrome and Hashimoto's thyroiditis. Will have to wait about a week for the results. Took 10 years, but I now have great physicians who believe me, understand these conditions and the harsh realities of severe episodic pain and debilitation attributed to flare-ups.

Hang in there Angie – I’ll keep you in prayer!

Sherry

Angie10 07-08-2010 02:55 PM

Re: Burning skin associated with possible sjogren's syndrome
 
Thank you, Sherry!

I cannot believe the comments you have received in your lifetime! Like you, I have had some lovely experiences and have had to go to different doctors to find individuals that are understanding and compassionate. Thank you for all the information you have provided. I will be doing my own online research (#7 made me laugh because that is me in a nutshell).

Take care and I hope you are having a good day!

Angie


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