Feeling confused. The last couple of weeks I've had itching that led to hives and welts all over my body (I was on steroids for it, but now finished) and they are still here. Yesterday (and today) my right hand feels very cold and there is a tightness in it making it more difficult to move. My brain fog seems to be getting worse. I lose my train of thought all the time. Is this sjogren's? Am I going insane? Planning on calling my PCP and telling her I'm ready to see the rheumatoid doctor. I need answers!!! Any advice, comments anything would be helpful right now. Feeling very lost.
Definitely talk to your doctor. When you’re immune system is not working correctly it tends to not work correctly with all sorts of odd symptoms. Seeing a rheumatologist should be helpful and hopefully you can work on disease control and not just symptom management.
I would encourage you to keep a journal with what’s going on, with a timeline. I’m a firm believer in over sharing with my rheumatologist, even if I’m not sure that it’s relevant.
Thank you Terry,
This is my train of thought also. When you read online you don't get all the little symptoms of stuff, but to me I see the butterfly shape on my face. It is not really a rash, just redder than the rest of my face. I've also always thought that I was just allergic to the sun cause that causes me to have a reaction also. I do not know a whole lot about either of these diseases as I've just found someone that is trying to pay attention to all of my symptoms as a whole instead of just treating them and getting me out of there office. I will be digging further into them and I WILL be making an appointment today with a rheumatologist. Thank you all for your support.
Frustrated Mom,,,,,as a side note, you also mentioned brain fog. That is totally normal for us and can be worse if you are fatigued. It can be scary and frustrating at times but its easier if you recognize it when its happening. I've gotten to the point where I can at least laugh at it with other people that get it. Still, please don't hesitate to vent when needed....
It is frustrating especially at work. At home it's a little different cause they know what's going on and just pick on me when I say my sentences wrong, but at work I'm supposed to be professional and since I do accounts payable I'm certainly supposed to be accurate! lol I've noticed in the last 3 months that I'm making little mistakes that scares me. It's just a matter of time before I make a big one that I don't catch. I have finally made an appointment with a rheumatologist, now just need to wait for April. I go to the ophthalmologist tomorrow concerning my eyes. Dryness and blurry and such. I'm excited to have people to talk to that are pushing me to get the answers I need. Thank you!
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.
You should go to RA doctor. My brain fog varies each day. some times it feels like things are going round my brain twice before I can answer. My RA doctor is very good, he listens, and answers my questions.
If the lights in your work area are fluorescent, you might want to ask your employer about installing louver covers (they look like a small grid). I have a couple of friends with lupus who burn easily just from the fluorescent lighting and the grid-like louvers do help. If the lights do affect you, make sure you wear sunscreen inside your work location also.
Also, if you can get into a dermatologist sooner than April, you might consider that as they can test the lesions to see exactly what's going on:
http://answers.webmd.com/answers/648546/how-conclusive-is-a-facial-skin
What has your RA doctor told you about brain fog? Mine says there is nothing we can do for it. Is that true? I hate having to explain my condition to everyone. I feel like a am asking for pity or being a whiner when really I am explaining my behavior. Thank goodness my family and a few of my close friends understand.
Aunt J said:
You should go to RA doctor. My brain fog varies each day. some times it feels like things are going round my brain twice before I can answer. My RA doctor is very good, he listens, and answers my questions.
O boy do I know what your going through. I have been in a state of confusion for a few months now. I finally got into the nuero. and I went last Friday for a MRI. I haven't gotten the results back yet but I have the exact same as you. I had Hives found out it was an Autoimmune in its self the rash. Steroids don't work. My right hand is always cold, tightness feels as though I'm straining my hand just to move it or pick something up or scratch. Im having trouble pronouncing words, or even getting a thought to come out of my mouth its like the words are lost in my head and I just can't retrieve them. My right leg moves on its own quite a bit and I have loss of balance all the time. So much so I've had to quit bowling on league and tournaments which I have been bowling since I was 5. I also have pain in the right rib area and also toward the back. The Dr said she had to rule out MS, Stroke, and Parkinson.And we will go from there. Its very difficult. I spoke to my employers and let them know about the sjogrens, So they are on board with my health. It just is difficult to explain to people. Do research on the web, See a Rheumatologist. and try and take it one day at a time. Just hang in there Frustratedmom, you are not alone. I use Vitamin E oil on my skin, it helps, stay out of the Sun and if your in the sun stay covered, long sleeves, Hat etc. Sleep any chance you get!!! Sleep for 10 mins, 10 hours get lots of rest. I have noticed my symptoms are not nearly as bad when I am well rested. Take Naps when you can. Keep your sense of humor believe it or not it helps. Take Care and let us know how you are doing!
Beeb
I use to get welts, hive or blisters all over my body. Any RX creams only made it worse and caused infections. I'm not sure if what I did fixed the problem or my body just worked it out.
For opened ones I washed the area with ivory soap thoroughly and 3m paper taped over it....I left it that way for a week. It healed and disappeared.
I use gloves in the shower with a lot Ivory soap on them and thoroughly with hands flat against my skin went over my neck down 4 or 5 times and thoroughly rinsed my skin to squeaky clean. and I never put any creams on my skin neck down. I do this every morning...and my skin issue have disappeared for the last 7 years. (I came very close to losing my right leg because of a tiny blister got infected which took 2 full years to heal) I drink also drink 2.5 lt of water.
Water has helped me in so many ways... stopped my headaches, back pain, skin on body and face, no more bladder infections.
As for memory and brain fog. I do the only things that are with in my power. Sleep!! is critical. I cut out sugars, salts, sauces, wheat and all junky type foods. I eat a lot of veggies...raw. small amount of clean dressings. Red meat once a month and when I eat meat its fish or small amounts of chicken or pork (I seem a lot better without the meat)
I ride the stationary bike every morning on low tension for 30 minutes to an hour with my water and my only vice black coffee. When I am home all day I ride the bike 3 times in the day. This will make you feel fabulous!
And to you question of "Am I going insane?" I have felt that so many times...but the answer is no. Your just sick and you will rise above it soon.
My MRI showed over 25 lesions up to 7mm in size. I haven't met with my specialist yet...a little stressed about it...but in asking other people this seems to be common.
Thank you all for all your comments and stories. They help a lot to know there are others going through the same frustrations as me. I am hoping for the best and I go day by day. I know I don't sleep right, eat right, and most of the time I do not have the energy to exercise. I have a membership to the gym and I will go two or three days then it takes me two weeks to recover. I want to exercise to feel better and to look better, but right now I am focusing on trying to drink more water and eat better. I love my coke and my sweets though!! I'm so sorry that all of us are going through this. My employers know I have a lot of doctors appointments but as of yet I can't give them any answers. Hence the frustrated mom part. We've made some changes at home and we are spending more time with the kids, which is great and I'm loving it.
You are not alone in this. I agree the more rest the better and stress reduction. Prayer, and meditation help me with Pandora spa music. Stay out of the sun as much as possible and drink lots of water. It sounds like you are in a flare but hopefully you will heal quickly. Exercise is essential also and I can never get enough! Praying for you now.
Thank you all. I will try to fit more exercise in. I'm taking a half day at work to go to the ophthalmologist, so I will rest this afternoon. I pray for all of you also.
Lulujane,
How do you manage to exercise?! If I have one good day even the smallest amount of exercise makes me feel like I’ve been run over by a truck the next 3 days. Please tell me how are you able to do it?
What are you taking for treatment if you don’t mind saying?
I used to love my exercise and now I can’t, I’m gaining weight and I really hate that.
I’d appreciate anything you can share.
Thanks
I used to be a P90 girl and was hard core in the martial arts. Nowadays its yoga and the elliptical. They help a whole lot with the symptoms. The nice thing is that after a couple of years out, I am back in the martial arts and doing well, though i don't train near as many times a week as I used to. I guess that's part of my new norm. I hope it helps to know that a) we can still do what we love, even if it is in a modified form and b) things can get better. It took a long time to get my med mix right, etc and while also to build myself back up physically. i think its a matter of being willing to be patient and taking it very slowly. There seemed to be a tipping point that I started feeling better.
h
Beeb said:
O boy do I know what your going through. I have been in a state of confusion for a few months now. I finally got into the nuero. and I went last Friday for a MRI. I haven’t gotten the results back yet but I have the exact same as you. I had Hives found out it was an Autoimmune in its self the rash. Steroids don’t work. My right hand is always cold, tightness feels as though I’m straining my hand just to move it or pick something up or scratch. Im having trouble pronouncing words, or even getting a thought to come out of my mouth its like the words are lost in my head and I just can’t retrieve them. My right leg moves on its own quite a bit and I have loss of balance all the time. So much so I’ve had to quit bowling on league and tournaments which I have been bowling since I was 5. I also have pain in the right rib area and also toward the back. The Dr said she had to rule out MS, Stroke, and Parkinson.And we will go from there. Its very difficult. I spoke to my employers and let them know about the sjogrens, So they are on board with my health. It just is difficult to explain to people. Do research on the web, See a Rheumatologist. and try and take it one day at a time. Just hang in there Frustratedmom, you are not alone. I use Vitamin E oil on my skin, it helps, stay out of the Sun and if your in the sun stay covered, long sleeves, Hat etc. Sleep any chance you get!!! Sleep for 10 mins, 10 hours get lots of rest. I have noticed my symptoms are not nearly as bad when I am well rested. Take Naps when you can. Keep your sense of humor believe it or not it helps. Take Care and let us know how you are doing!
Beeb
Hi,
I also have many skin problems for which steriods are no help. When itching is really bad I fell a tub of lukewarm water with a half cup of baking soda. I’ve also learned it’s the long term low dose steriods. Like many here I have many diagnosed problems and it seems there is more to come.
I get clothing with sunscreen in it and always where hats.
Steriods thin our skin and were more sensitive to the sun.
Thank you both for your replies. It is good to know that I have people to talk this crap through with. Beeb--let us know when you get the results. I started researching again today, which is not a good thing for me cause I seriously don't know what to research and too many things come up. I try to take it day by day and keep my sense of humor. I make fun of myself all the time! lol Kquixtar--Do they really make clothing with sunscreen in it? Never heard of that. I have been on steroids so often for sinus issues and other things, so I can see where that comes from and I do recall my PCP telling me that when she gave me the cream to try on my skin. It seems to help the itching a little, but doesn't do anything for the ones that just pop up on my arm and don't itch.
Always glad to talk about skin problems. I’ve been dealing with it for the last two years.
I so miss exercise. I do do yoga but I have no energy.