Hi, I have sjograns , but do you guys also feel this way...

[Shaleni]

I have pain all over my body if not one part there is another, i have very dry skin ,very very dry mouth and eyes , I have rashes on my hands,fingers toes ,soal of my feet and just above my ankles and all over towards my toes. It itches,hurts and burns it's so hard to sleep in the night have to wet my hands and feet so it soothes a bit for a while then back again have to do this most of the time. Does anyone else feel this way? Is this still sjograns? Or also something else?

[weathervane]

I think its probably sjogrens , i have most of these problems bar the rashes , but my feet can burn at night

[Persiankiwi]

I have fibromyalgia & chronic fatigue, GP just diagnosed sjogrens & optometrist agrees but waiting on Rhuemotogist appointment on March 3rd but I have pain in all four quadrants of my nody but soles of feet burn & chronic leg pain, worse late afternoon, evening & night, only sleep 1-5 hrs a night but every so often sleep 11 hrs but still feel like only had an hour, electric shocks from toes to thumbs & different sort of itchy rash every 3 weeks. Feels like water is running down my legs but nothing there. I have magnesium bath before bed ( Epsom salts) helps a little. Do you have jumpy legs as well. I sometimes have to walk a little in the night to alleviate the pain & then I nearly always lose my balance. Have you seen a Rhuemotogist or immunologist

[Megansheart]

Shaleni, have you been diagnosed yet with Sjögren's Syndrome?

In your message you have raised three main issues.

One is the all over body pain. The second is the very dry mouth and eyes. And the third is the skin rashes.

- The body pain issue is an interesting one. Often Fibromyalgia is the first thing diagnosed when people have widespread pain but often other conditions subsequently emerge which could also be the cause. However based on my reading, in Sjögren's there is not a lot of acknowledgement that body-wide pain is a factor. Yet many of us have it. Solution: Try and get a diagnosis first, meanwhile are you taking Panadol or Panadol Osteo......? It is what a doctor would tell you to take (as long as there are no contraindications) before putting you on more high powered narcotics and antiepileptics.

- The very dry mouth and eyes are the 'hallmark' symptoms of S.S. Often dry eyes and mouth are the only symptoms S.S people have, sometime they are the worst of the symptoms S.S. people experience and other times the least of their problems (at least initially). The reason for these dry eyes and mouth (and other areas such as vagina) is because the exocrine glands of the body fail to produce the necessary lubricants, such as saliva and tears. You are probably already taking eye lubricant drops several times per day. It is crucial you don't let your cornea's dry out as you can get corneal ulcers and permanent scarring. There are other products and management which your Opthalmologist can advise you of. Your dentist can advise you of various management strategies for your very dry mouth.

- The rash!! Sometimes when one has one autoimmune condition one may also have a second autoimmune condition. Have you been checked out for Psoriasis? I think it could be worth being checked as there are medications which can relieve the discomfort. See a dermatologist if you think this is an isolated symptom but see a Rheumatologist first if you have been given the S.S diagnosis.

Obviously getting someone to listen to you is important. What you need is a skilled medical practitioner to see connections between your diverse and disparate symptoms. So often it is beyond a GP to put it altogether unless they have seen it before. (I struggled with this for a long time and wondered why a GP couldn't work it out as I just knew that all my symptoms were connected and not separate conditions).

I hope you get some resolution to your problems. Let us know how you get on!

[stringstudio in reply to Megansheart]

Well explained.

The symptoms sound identical to mine and I have psoriasis on the soles of the feet too which is a hard area to treat. Eventually I had to have controlled UVA burning in a hand and foot machine as mine was so bad my feet were bleeding and I ended up with septicaemia .

I find that taking magnesium supplements in the evening help a lot with the feet cramps

I keep the psoriasis well moisturised with high Potency vitamin E cream or oil every hour

Good luck. Took me years to find all these little tricks. Oh how we suffer

[bambino4]

Hi shaleni...i have sjogrens, was diagnosed 2 years ago...i have painful burning dry eyes and blepharitis but i do also have body pain yes! Throughout my whole body! The reason my doctor originally was suspicious of me having sjogrens was because of my aching limbs and joints teamed with my dry eyes so it is a sympton. There are many symptons of sjogrens unfortunately for us, it is extremely debilitating to live with😣

[swaylee]

Hello, I don't have much muscle pain yet aside from cramping, but the dry mouth dry eyes and burning sensations are intense, I have difficulty eating, sleeping, memory fog, and lately new odd skin conditions, dry skin, severe itch on my legs, rash like bubbles on my neck and sometimes on my stomach. I think the heat like a heat rash will come up if we get too hot I find. Cool water helps me and moisturiser especially organic coconut oil.

[TV12]

Hi Shaleni,

Re: rash- also get checked for Celiac Disease, eczema, psoriasis, Chron's, or other food/environmental allergies. If negative, see a dermatologist and see what they say. Your rheumatologist or the dermatologist can prescribe something for the rash.

Re: burning pain - same list of issues above can cause rash AND burning pain (along with Sjögren's or fibro), but also get checked for vitamin B12 deficiency, low iron levels or low iron saturation, and have them check magnesium, potassium, Vitamin D, and your blood sugar while they're checking things.

Hopefully answers and treatment are in your near future!