I am going to write some information about Sjogren's Syndrome and a little about fibromyalgia. This information is based on my experience and the millions of questions I ask my rheumatologist (because I bring a list each visit).
Let's begin with Raynaud's Phenomenon. Have you looked at your feet and they're purple? Or white? Maybe your legs are blotchy? Generally it is the constriction of your blood vessels- and if they're blue it's the pooling of blood in the veins. sometimes it shows signs of vasculitis, but your rheumatologist will run tests if it looks worrisome.
You (and I) can have fevers, fatigue, reflux, achiness, muscle weakness, numbness and tingling, itchy skin (watch those rashes!), cracked skin, hives, mouth sores, Depression, hearing loss and nasal problems. (Just to name some problems.) it's mandatory to keep your doctor informed of all changes in your body. Also remember to keep skin hydrated and to mention any changes, (rashes etc) to your rheumatologist.
Pain is probably the worst problem I have had. My wrists, ankles, knees and elbows throb and ache in use or not. Muscle weakness is when you feel like jelly when you walk as far as you used to. Going up and down my stairs my legs don't feel strong enough to make it. I was told to exercise as much as I could each day. Many days, because I am in severe pain, I just walk around my house, taking the stairs a few times. You might be able to do a little more. I plan to start gentle yoga next week.
Pain is the monster of both conditions as far as I'm concerned. Well, I may feel differently when my mouth is too dry to eat and an eye lash made me feel that my eye has been stabbed. (If that happens a warm compress helps and Systane makes a gel that should help, and can be used every night.) That pain from the eye lash is often sharp and will stay around awhile.
Pain comes in many forms and levels. I try to journal my pain. I to use the 1-10 system the hospital does as well as describing the pain. Is it dull, sharp, stabbing, moving, burning, aching? Most pain related to fibro and Sjogren's responds well to heat. I am a huge fan of heating pads. I have several. If a warm hot tub or pool is available, take a short dip (but remember that hot water dries out skin), also for a lot of people a shower works. No magic product on the market helps. A rub down with some thick cream relaxes you, moisturizes your skin and takes the edge off the pain.
Relaxation is so crucial to lowering our pain levels- no matter what type of pain. You may have prescriptions for pain. If it hurts bad enough that you can't move easily, is making you have anxiety or just throbbing through your body, take the medication in the dose prescribed. Then try to relax with music or whatever works for you. Don't let it get to an excessive level because then the medication may not work.
Mouth sores make it harder to eat than just a dry mouth. Ask your dentist or rheumatologist how they want you to handle these. I get thrush, or yeast infections (yuck) in my mouth often and I have tablets to suck on and I stick to a soft diet. But I also get sores that are like chewed up skin. I stick to a liquid diet at those times. Ask your doctor or dentist what to do of you get mouth sores or your mouth turns white. What I do may not be how they would handle it.
By the way, I was writing about eye drops and blurry vision yesterday. Part of the blurriness is from certain medications, especially DMARDs. If you also have fibro than you should know that Lyrica can cause blurred vision. I have terrible vision anyway, since I take those medications I don't drive at night and as needed during the day.
Nasal problems can occur as well. I get the dry sinus infections that hurt terribly. You might get other problems, including bloody noses. It is recommended that all Sjogren's patient's use humidifiers throughout their homes to help keep moisture flowing. Try to keep them in the rooms you're in the most.
Many of us with fibro also have odd numbness and tingling in our hands and feet. Please tell your rheumatologist about that. It can be a variety of things. It's annoying, scary, uncomfortable and kind of strange, but so are these conditions. I get numbness and cramps in my feet and tingling in my hands. It generally happens when my wrists are screaming in pain and my arms have a moving burning pain. Pay attention to when (if) it happens to you. Write it down and see if it's the same every time. These are things to tell your rheumatologist.
I have had MRIs, CT Scans, been to the neurologist, so I understand. It's scary and confusing, and you often don't get the results quickly. These have to be done because they may provide important information. Anything that can help us is a good thing.
Falling into depression from all the doctors, medications, your role in the family and how much pain you're in is common, but still serious. I see a psychiatrist, some people see counselors. Support groups help. But I think it's very important to tell either your primary care doctor or rheumatologist if it is causing you to feel sadness or anxiety most of the time. Don't let your illness define you. And get help. I did.
I just wrote about a few things that were not as basic. I'm open to suggestions. I'm not a doctor, just someone suffering from Sjogren's and Fibromyalgia (who happens to be neurotic with adult ADHD).
I hope something I wrote helps.
peace & love,
sunee
- Posted using BlogPress from my iPad
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