I know that Sjogren's can cause neuropathy, but I'm not certain I really understand neuropathy anyway. Even as a nurse, I'm somewhat stumped. Since our bodies have neural pathways everywhere, can this related neurpathy cause problems everywhere?
And...does time in the sun increase the symptoms of Sjogren's the same as it does other auto-immune diseases?
I have been able to pace myself to avoid the fatigue over the past several months, but the last 4 days I have spent in Las Vegas helping my daughter who just had a baby.
She lives in Las Vegas, and needless to say, it is hot! I spent the last two days at the pool for several hours. I've been in the water most of the time, so I've stayed relatively cool. But today, I feel like a wet noodle. It literally takes the energy out of me to even stand.
On top of that, I've developed a new symptom. (Why is the first question in my mind always "Is this all in your head?") My feet and legs have been tingling. Kind of like when they first start falling asleep. Last night I woke up to the tops of my feet feeling numb. And they itch. They're not sunburned, fyi. But, this feeling has persisted. Have I been in the sun too long? Does the sun have anything to do with this?
Do I report this to my physician? I have seen my Rheumatologist twice now, but I don't generally speak to her between visits. I don't want to be a nag, and generally, I am a very energetic person. So...today, I am quite depressed. I HATE this!!! I feel useless today. I don't want this to last.
Is there anything I am doing wrong, or anything I need to do differently?
Hi Kadiddle (love that name!). You don't say how long it is since your Sjogren's diagnosis, but I was diagnosed in 2013. My Rheumatologist described what has recently begun going on with my feet, ankles and lower legs as neuropathy. I feel like I have bugs on me or like my foot is touching something when it is not. However, what you are describing with the numbness, itching and total exhaustion is exactly what I experience if I get too much sun. I hope that this helps a little bit.
Ah, I just noticed that you were diagnosed over 20 years ago. I suspect that I had Sjogren's long before my actual diagnosis, but when I was told what was wrong, I had never even heard of it. The doc just put me back on Prednisone and we are trying Cymbalta to see if I can tolerate it. I couldn't deal with the side effects of Gabapentin and Lyrica broke me out in hives. Hopefully, it will give relief for the fibromyalgia and the neuopathy as well. Time will tell. At least I don't seem to be having any adverse reactions.
Hi Leslie. I actually was only diagnosed in December. But I suspect I've had it for many years. I'm on Plaquenil and I have noticed some good changes. But this thing with my feet is very new. It does feel like bugs crawling.
I guess I better stay out of the sun. I have stayed on all day. Mainly, because I'm too exhausted to do anything.
By the way, Kadiddle was a nickname my grandfather gave me as a child. ????
Kadiddle, the sun will bring on a flare with me as well. I have RA and SJS, so I will start aching and having awful fatigue with UV rays. I hate it too. When I swim, I wear a shirt with SPF in it to protect myself. I stopped taking plaquenil a few weeks ago b/c of side effects and I can tell the symptoms of RA are coming back like pain in my hands and feet. So far, my energy is not worse.
I am not sure I have much neuropathy with the SJS though. I occasionally get this strange vibration sensation just as I am waking up and I don't know if that is neuropathy related or not.
The problem with auto immune flares, they can last a while. I hope you feel better sooner rather than later so you can enjoy your trip.
Thank you Deb. I knew the sun can wreak havoc on so.e auto-immune conditions. I was hoping it wasn't the case with SJS. But I think I got my answer. Ugh. So sorry you had to quit the Plaquenil. Did you get started on something else?
I leave Sunday, but I'm going down to Mississippi to visit so.e cousins- more heat. But.....I'm hoping I'll spend most of my time indoor.
Kadiddle, there could be lots of reasons for your symptoms from air travel (if you flew to Vegas) to heat (which wipes out most people with SjS), helping your daughter, etc.
Did you fly to Vegas? If so you may want to check on symptoms of deep vein thrombosis and make sure that is not what you are experiencing.
This is a great book about neuropathy: amazon.com/Peripheral-Neuropathy-Numbness-Weakness-Neurology/dp/193260359X/ref=sr_1_4?ie=UTF8&qid=1496450950&sr=8-4&keywords=peripheral+neuropathy+in+books. What I learned is that no one seems to really fully understand it. What I also know is that for some people SjS does lead to neuropathy, though what types of neuropathy differs and some have multiple types.
I have neuropathy and have had symptoms similar to what you describe, except I don't recall itching. I have to take meds for the pain, which worsened last year to the point where I was miserable a lot and didn't sleep well.
If you don't believe there is an emergency situation track your symptoms and try to see if you can ID a trigger, sometimes one can do so sometimes not.
Thank you Sjo- girl, for the added information. I did fly, and I didn't think of the DVT. However, I did check with the "Homan's sign," and there is no pain or swelling in my calves.
The heat thing is new for me, because it hasn't been that hot where I live.
And....I have been doing more than I do at home...with the grandkids.
At this point, if it is indeed neuropathy, I'm not having any pain.
Thanks for the information. I do have so much to learn about this Sjogrens and everything that is involved.
This is a big puzzle and all the pieces read "kick the autoimmune issues up a notch". You have had a lot of change with the travel and helping your daughter plus a different climate. All of these can cause stress on a persons body with resultant increase in symptoms.
Then you had the audacity to try and have some fun.lol Being in the sun, especially in the heat, can really knock us down and out. I was at the lake for about 5 hours each day last weekend -- I used sun screen and kept a towel over my legs, etc.,. I spent all of Monday down and out. Could hardly move and so exhausted and the next day wasn't so hot either. Our bodies just don't tolerate the sun or the heat very well.
I get the foot issues you describe and it has to be autoimmune. My feet will even feel very hot when I touch them and will look a little red at times. It hurts to even have a sheet touch them. I have had this periodically over the last 30 years or so. Hope you feel better. I would just write this down and tell doc when you have your next appointment. Of course, if you don't improve you might need to put a call into the doctors office. Good luck. Irish
Thanks Irish. We actually live on a lake and I love the Summers. I am going to have to change my MO. Ugh.
You're right. I think I did too much and then played in the sun for 2 days. No sunburn because I used sunscreen, spent most of the time in the pool, but it is Vegas.
Live and learn. I will never make fun of anyone that says they have fatigue, or chronic fatigue again. I was one of those non-believers. Not really a non- believer , but just thought it was an over-reaction. I'm ashamed of myself. This really sucks and I HATE it. I feel useless when it hits me.
I appreciate the feedback. I'm going to start keeping a diary. Sometimes I forgot the issues when I see my Rheumatologist.
Hi :)
Plaquenil/hydroxychloroquine makes sunburn more likely. The sun is not our friend.
The sun rays are like a poison to our body when we have autoimmune. It took me so many years to get diagnosed but being an old nurse I knew about the sun and autoimmune. About 30 years ago I noticed that when I worked in the garden even with sunscreen I would get like a prickly heat on my arms. My arms would have prickly pain and be a little red almost like little dots. I told my immunologist about this and he had a name for it which I promptly forgot. He explained that the sun affected the blood and caused it to have this reaction. Apparently it is very common in autoimmune disease.
So, the older I get the more miserable I can be. So I go to the boys cabin and sit with a towel over my legs (bermudas), my wrap around sun glasses on,(I have learned to sit with my back to the lake cause the glare off the lake from the sun really does a job on my eyes) and then the suntan lotion all over plus a mans light colored long sleeved shirt. Boy I am cute. Try to explain that to people especially when you don't look sick. Aint it fun!!!!!!Irish
Congratulation on new grandchild.. :)
I remember that 24 yrs ago after the birth of my daughter, if I was in the sun I felt like a wet rag and would get what I termed a "sun headache". Fatigue and other symptoms presented .. most of us know the journey.
14 yrs later I was Dx'd with Sjogrens.. so a long time.
For the most part I get sun in early day and very late afternoon and onward.
Check to see if the pool chemical + sun are drying thinner skin on legs?
Rheum advised me to alert him if I was ever to go on vacation toward the equator, in which event he would increase plaquenil to 3x/day.
https://www.hopkinslupus.org › ... › Lupus Medications and Treatment Options
Plaquenil and other anti-malarials are the key to controlling lupus long term, and ... Anti-malarials can protect against UV light
While you feel cool in water: "(By comparison, grass, soil, and water reflect less than 10 percent; dry beach sand 15 percent; and sea foam 25 percent, according to this UV fact sheet from the World Health Organization.) " On top of direct rays
When the sun's UV-B rays hit the skin, a reaction takes place that enables skin cells to manufacture vitamin D. If you're fair skinned, experts say going outside for 10 minutes in the midday sun—in shorts and a tank top with no sunscreen—will give you enough radiation to produce about 10,000 international units ..
NIEHS Director Linda Birnbaum, Ph.D. "This study adds UV radiation to the growing list of environmental exposures possibly important in the development of autoimmune diseases." http://www.niehs.nih.gov.
Congratulations on your new grandchild. How exciting! Jeez, I'm sorry to say this to anybody else but you sound just like me. I was only diagnosed with Sjogren's a few years ago but even as a child, spending time in the sun wiped me out. I'd be so fatigued I couldn't move. And even with sunblock, I'd get terrible rashes.
As an adult, we'd drive to Las Vegas to visit my aunt and uncle. In Las Vegas, I couldn't breathe, my lungs were so dry and I was so fatigued I couldn't move. Everyone else was outside in the pool and I'd be inside feeling so unwell. The last time we went, I felt so terrible that we cut our trip
short to drive back home to LA. Now that I've been diagnosed, I know my Sjogren's couldn't cope with the dryness of Las Vegas.
I've also had neuropathy for years and now also have Trigeminal Neuralgia. I always feel like a bug is crawling on me, or itchy or bubbles are popping in my legs or am tingling/numb somewhere. I take Tetrigol which has been somewhat helpful but has increased the depression.
On your trips to Vegas, besides avoiding the sun, make sure to have a humidifier, eye drops, nose spray and chew a lot of gum to keep your mouth moist. Good luck to you! ????
Hi Sweetcheex,
Thanks for the words of wisdom. I'll undoubtedly return to visit, so I'll heed your advice.
Hello Quietdynamics. Interesting read. I'll talk to my Rheumy about the increase in Plaquenil when I make visits to Las Vegas. Anything to keep from feeling that fatigue.
Someone else might have already said this (I'm tired, so I just scanned everyone's comments), and you know better than I if the sun caused your itching, but as an FYI--neuropathy can manifest as itching. When my carpal tunnel acts up, it causes me to feel like my palm is itching, when it is actually the irritated nerve causing the sensation.
I am a nurse too, and I started having these weird symptoms (which I have self dx'd as primary Sjogrens syndrome) this summer as I spend a load of time in the sun at a pool for the first time in 14 years. Now I am trying to cope with this extremely dry sticky mouth, insomnia from it, hearing issues, fatigue, dry eyes, panic attacks, numb hands, dry skin, awful taste in mouth and ETC.... as I try to get doctors to listen to me and order tests that may diagnosis. I am fairly certain that sun exposure brought this on. No rashes. Steroid dose packs are the only thing that give me some relief. I just want to feel normal again!!!
It all has turned out to be related for me. My Disordered Immune System has caused everything, except perhaps when I dropped my computer on my foot! (an attempt at humor, but it DID hurt since it fell edge down on the top of my instep, which saved the computer from damage, I guess.).
I'm sorry to hear about the development of Peripheral/Small Fiber Neuropathy. The PN has been so severe (Profound) that I can walk with braces, and then only with difficulty.
Best wishes,
Regards, Elaine
If you don't mind me asking, Elaine, what is it about the neuropathy that causes your need for braces? I've had an increase in ataxia and also have PN. Been wondering if bracing would help, and if so what type of brace(s).