Ugh, I hear ya. I got hit with huge welts all over my trunk area last week. It came on out of the blue and was just brutal. I took an allergy pill and coated the areas with a cortisone cream but if it got any worse I would've headed to the hospital. The outbreak was over in about an hour but it took a long time for the swelling to start going down. Took a couple days for it to be totally gone. It always scares me when stuff like that happens. Feels very out of control.... but its also why I keep things on hand to deal with it. Goes a long way towards easing the anxiety.
EnjoyLife-That's what we all need to do is enjoy life. I've had rashes on my arm for a few years now, not bad, but I thought it was sun, dry skin, or stress. Now the last couple months it's gotten worse. Part of me enjoying life is being who I am, so I like to wear short sleeve shirts, so I do have to deal with questions, but I just tell them that its part of my charm or some smart ass comment. I too keep a lot of medications on hand also. Mine have been coming on and staying for like 3 days, then goes away for about a week then it's back again.
Sjohell, we can be photosensitive....sometimes because of SS itself and other times because of the meds. Its a matter of finding ways to deal with it that work for you. For me, its a good thing I have tattoos because that's my mental trigger to use sunscreen. LOL.
FrustratedMom, I like your answer of it being part of your charm. It made me laugh, and rest assured I will end up stealing the idea of making a joke about it. So much easier to keep rolling that way.
Yes with S’s your will brain fogs a lot. I joined the Sjoggers foundation in Bethesda MD, that how I know.
I have brain fog also sometimes really bad. I bought a book about brain fog, and it talked about eating right. really a waste of money. I can't eat fruit and tomatioes because of GERD.
I have brain fog frequently and it's embarrassing when I'm around unsympathetic people (which is most everyone). Like a lot of you, I also have gastrointestinal issues and sensitivity to food. My list of OK foods is very short, and when suffering an active flair (currently on Day 3 of a nasty one) even the "good" foods go right through me. The fatigue, weakness, chills, etc. wear me out completely. Will say that exercise helps for the depression if you can drag your body to the activity. Anyone else have permanent dark circles around your eyes?
Sjohell,
Most people do not understand what we go through. I am doing good this week. My arms are clearing up, my eyes hurt but not as bad as usual. I have days when foods do that to me also, then I have days where I'm the complete opposite. I downloaded some videos last night that I want to start doing tonight. I know that any exercise I do will be helpful. Also reading everyone's posts they say they feel better when they eat right, so I'm starting to wean myself from my coke addiction. I will go through the migraine's this weekend if I must, but I know i have to get rid of it, plus this weight I carry around is not good for me. I'm pretty sure that we all have permanent dark circles under our eyes. My daughter told me about this makeup product that does blur some of the face issues. Mine is normally pretty red and looks like a rash or whatnot. Works pretty good. I wear glasses (can't do contacts, uugghh) so people don't really notice. I just started wearing make up again after 10 years of not. I'm trying to do cheaper things for me that make me feel better about me. My husband and kids love me just as I am, but I don't and that makes the depression even harder.
I agree about the exercise. It really helps with my depression, but one good workout and I need days to recover. I walked outdoors Sunday and felt wonderful, then yesterday had a major flair, with fever, joint pain, diarrhea, and fatigue. Overnight the fever broke and I'm better today, but not at all motivated to exercise yet.
Hey frustration, I'm Deb's 34 with minimum 10yrs of suffering diagnosed just 3yrs ago. For my skin I use oils such as coconut or olive (just from food shops) no soap. Natural cleansers like cucumber, egg yoke which cleans hair well and egg white is a natural toner. If not wanting to wash with oil use a quality moisturiser as your soap! I used allott of deep heat now I make scotch bonnet olive oil for my legs and feet to help circulation, warmth tho short acting good for a massage of my painful muscles and joints. Natural remedies seem to be my best resolve yet. My concentration has become that of a fish when I am stressed so have gone all out to keep my home environment relaxing avoiding any stress you can will ease flares n'such. I noticed first my words were always lost as soon as I thought of them... I'd recall them later on. It is definitely the Sjogrens but you can ease it by giving yourself tasks to concentrate on everyday even for 10min in your stress free space. Personally I'v been left completely uninformed when it comes to any doc's so if you think you know what will help you just tell them as most likely they won't know and just try everything on ya Xxx
Trudie said:
Hi. Yes it's difficult to get a proper diagnosis. Apparently mine started around 40 y/o, didn't know if at the time. Thought I was having a heart attack and found out my potassium was too low. It didn't happen again for about 5 years, after the 3rd time I finally had a work up with a cardiologist, not hesrt. The a nephrologist who said my kidneys were simply dumping my K randomly but he had no reason why.
Then I find this damage was caused by the Sjogren that had yet to be diagnosed.
After I had gone to my PCP almost every month because of fatigue, pain I never had before, the start of a neuropathy in my left foot! I have always exercised and could not longer tolerate anything, even a 2lb wt!! I could bench press more than my body wt at one time.
She did a bunch of diagnostics and finally my ANA on the labs was very elevated. Off to the immunologist I went. I have now been seen by 4 and this last one is best. I currently take plaquenil, was on Imuran however it wasn't doing much for the nerve pain or neuropathy. Tried methotrexate but became toxic, now I must wait to even re-start the Imuran until my liver enzymes are back to normal. Just putting my hands up to do my hair last night made my ribs hurt! I need to get to next Tuesday for my every 2 week labs and I'm hoping my liver recovers quickly. I'm now looking into two I'VE medication that have proven clinical trials effective for primary Sjogrens.
The fog and dry eyes happen to me as well. When on the methotrexate I got drier, but it definitely helped the nerve pain and neuropathy too bad I couldn't tolerate it.
Hang in there, find a good specialist and as there is no cure there are treatment options out there that work.Hiya when you say I'VE meds are they biological infusions?
Sjohell said:
I have brain fog frequently and it's embarrassing when I'm around unsympathetic people (which is most everyone). Like a lot of you, I also have gastrointestinal issues and sensitivity to food. My list of OK foods is very short, and when suffering an active flair (currently on Day 3 of a nasty one) even the "good" foods go right through me. The fatigue, weakness, chills, etc. wear me out completely. Will say that exercise helps for the depression if you can drag your body to the activity. Anyone else have permanent dark circles around your eyes?
So glad you asked my under eyes have been awfull for most my life and when flaring I look like a drug addict.....and I can't even take drugs for my Sjogrens!!
Frustratedmom, those symptoms are what first made me go to the doctor. I was afraid I had early alzheimer's. I have trouble spelling now, which I have always excelled at. I can be in the middle of doing something I have done for years and forget completely how to do it or what I am doing.
the hives I currently have right now and haven't been able to get relief from them. I am not sure whether they are related to medication or the condition as I was recently diagnosed with temporal lobe epilepsy and have a reallllllly bad neuro.
The right hand sounds like a circulation problem from swelling and I would see a doctor about it. no, you are not going insane. I go through those same symptoms and more and I am sure many others here do to. it is always better to be checked than to cause panic thinking it may be all kinds of other stuff when it may be something simple.
Thanks guys. It helps knowing that there are so many others out there. I am doing pretty good at the moment. The hives and rash on my arms have all but disappeared and my eyes have felt pretty good for the past week and a half. I have a rhuemy appt in April. Takes 4 months to get into any of them!! Still pretty tired, but trying to push myself and exercise and I'm trying to live a cleaner life. That is not easy. So far I'm trying to give up my caffeine. I'm a huge Coca Cola addict, but since I"ve started trying to get rid of it I've lost 10 lbs. Yeah me. So--do we HAVE remission periods?
A couple of months ago, I felt normal for 2 days. Didn't do anything different. The brain fog does get to me. some days it feels like things go around in my head 2 times before I can answer. My RA appointment is in April, but I'm getting a blood test done every 6 weeks. been on Pred. since last April, but at a lower dose now. Still have weight gain, tremors, hot flushes and sweats, but not so bad.
I have SS & RA I have developed bruises on my arms the look like red moles.
In 2009 I was diagnosed with RA and put on Remicaid which worked for me about 3 years then just stopped. After that with other biologics and medrol I developed this bruising if I just bump anything
A friend of mine with RA had similar bruising like this develop on her arms. I can't remember the exact details now but it was something to do with high doses of an NSAID with codeine for pain relief.
Kquixtar said:
I have SS & RA I have developed bruises on my arms the look like red moles.
In 2009 I was diagnosed with RA and put on Remicaid which worked for me about 3 years then just stopped. After that with other biologics and medrol I developed this bruising if I just bump anything
I get the same rash on my legs and stomach a lot and rarely on my arms. So far my doctors have brushed it aside as one of those things we have to deal with. Perhaps because I told them no steroids unto there is no other recourse. The brain fog I think all or most of us get. I just went through a phase which really bothered me where I made a huge bank error, (well, huge for me $70). I can be doing something I have done for years and suddenly not know how to do it right in the middle of doing it. This for me is the most frightening about SS. You aren't going insane but I suggest you go to your doc for your hand. Preferably your rheumy, they will know more about your condition than your pcp
Brain fog is the worse for me also. sometimes I can't remember how to spell a simple word. The rash comes and goes and doesn't bother me.