Update.....

So it's been a while since I've kept up on any journals. I went 98% gluten free, and was finding some relief. Mainly from the extreme fatigue. I went off gradually over a 4-5 day period to confirm my speculation and everything came back with a vengeance. Also have been wearing support socks which has helped with something but not sure which since both occur at the same time. Edema in arms, wrists, hands, fingers, bottom of feet, and knees. Everything feels like a balloon being electrically charged and stretched at the same time. Also have large swollen veins again in the hands wrists, and legs. My sense of balance is off again as well and so as a result I'm having difficulty walking. At times it feels like my R leg is like rubber. I've also noticed my vision is more blurred. My hands and bottom of feet turn very red. And my fingers, especially in the right hand also turn a purplish color. Over the past couple weeks my skin on my hand seems to be so thin. I seem to cut very easily. I look down and random cuts seem to just pop up without me realizing that I've done something.

I'm only on vicodin for the pain. NSAIDS tear up my stomach and my throat swelled shut nearly about 3 weeks ago that I had to run to the ER.
I can't wait till my appt. @ JHH on the 27th of this month. They said since I didn't have an "official" Scleroderma diagnosis from my Rhuemy doc that I would be seen in their Rheum dept. first. I've written him off by the way. At least my GP is willing to prescribe me something and work with me while I'm going through this. He's perplexed and I guess has basically written me off at this point as far as any "real" treatment. I thought I was making such progress and was actually able to start keeping up with things around the house. Now I feel like I'm back to square one. My fingers on my right hand are sooo swollen they look as though they could pop.

I also recently lost my youngest brother to brain cancer. I am very appreciative of each good day I have and realize that what I'm going through is a mere comparison to the pain that others must go through. That courage that he exuded even up to his very last day with us, reminds me to keep having strength no matter what.

Report post

5 replies. Join the discussion

Please be sure to be taking your blood pressure several times a day. I had many of your symptoms shortly before my kidneys failed. If your blood pressure spikes it is a sign of kidney failure. It can be treated with ACE inhibitors if caught in time. This is very important!

Report post

Mimi in 2010

Hi Mimi,

What is JHH? Thanks.

Report post

@Mimi49-thanks for your reply. I have always had relatively low bp (104/60). On the 3 occasions when I was @ my Rhuem dr. office it was up to about 156/84. When I told my GP he had me come in about a week later and @ it's highest was 124/76. And both dr. dismissed it saying I was prob just nervous or anxious about my appt and diagnosis. Being in constant pain will cause your bp to go up and spike from time to time. So I didn't argue my opinion vs. theirs. It does appear, looking back, at the times when my pain and symptoms were flaring that my bp was considerably higher.

@wishicould- John Hopkins Hospital in Baltimore,MD.

Report post

I am sorry to hear you are in such misery. It sounds like you have alot going on. I have heard of people going gluten free for fibro. Some say it helps and others it does not. But sounds like you have alot more going on than fibro. I have suspected scleroderma on myself before because my fingers are always tight and swollen. And the skin around my finger tips peels really bad. My fingers look like little sausages when I make a fist.
I hope you find some answers and some relief somehow. At least you have some vicodin. I am glad for that. I say narcotic pain meds for all that need them.
Take care,
debra

Report post

You need to get your own blood pressure cuff and check it regularly. If someone had told me how crucial this is I would not be on dialysis 3 times a week. If your doctors are not stressing this, they don't know much about sceroderma and should be replaced. Mine have been!

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do