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bacchi220
05-17-2008, 08:14 AM
Hi. I am new to the site- quite far away from the U.K. (i live in California) but I guess that doesn't matter.
I am newly diagnosed but have been living w/ a similar disease (Ehlers-Danlos) for 15 years. Now this- but I guess there is a reason in the master plan for it.
How do you deal with the terrible exhustion accompinied by restlessness ( my blood feels on fire, can't sit still but also have no energy to move)? I have this weird rash all over my body (even in my nose & mouth), I have to go to work but I feel ineffective there. What helps with this tiredness?
Thank you for this site. :D

Faith
05-17-2008, 10:15 AM
Hi & Welcome bacchi220,

We are both in California; are you northern, central or southern?

What kind of rash? Discoid, meaning round and coin shaped and raised, red and scaly? Can you describe? If it's Lupus, as above, apply cream with cortisone (hydrocortisone) and it should go away (it can be purchased in generic at the Dollar Store). If it's not Lupus, it will not go away and then I would make an appointment to see a dermatologist and see what's going on.

Exhaustion, doc's usually prescribe Provigil; but unfortunately most insurance companies will not approve due to cost. Ask doc for samples maybe? Lots of naps and not pushing yourself too hard; though I still get very tired.

In order to make it thru my pt job, I take Dexedrine and alternate every other day with Phentermine for energy. I would sit down and talk with your doctor for what is right for you!! I do still crash (exhausted) in the afternoon and take naps. Unfortunately, there are not a lot of options out there. I also hit the wall when past the exhaustive state; cant' think of the correct words to say in the evening and I am just a blank. :idea:

I hope this has helped; not sure.

Take care,

Faith 8)

bacchi220
05-17-2008, 11:39 AM
Thanks for the response. I am in So. Cal- I have homes in both Laguna & Palm Springs area- how about you?
The rash is round red scaly things- the doc who diagnosed me did it through blood work & he is sending me to a rhumatologist (sp??) next week. I guess he will tell me what meds, if any to take. Dexadrine is kinda too much for me- I have a hyperthyroid & that sends me over the edge! :D
Thanx soo much fdor your help!

mnjodette
05-17-2008, 01:41 PM
Hi, bacchi220, and welcome to the club (not that it's one anybody REALLY wants to join!) Plaquenil is often used in treatment of lupus, and it's known to be effective for fatigue (and other things.) Not everyone can take it (although it's 'well tolerated' as the docs say) by most, and it has worked well for lots of people on this board (me, for one...really made a difference in my fatigue level.) You might want to ask your doctor about it and see if it's something they think could work for you. That mind-numbing fatigue is really hard to live with - I hope they have some good ideas for you.

Jody

AdriaV
05-17-2008, 07:10 PM
I've been diagnosed with lupus since nov of last year and I still have a huge problem witht the fatigue :!: When I want to sleep, I think i'll sleep for days. Right now i'm on the prednisone and CellCept. The CellCept makes me feel a whole lot better but it's quite expensive here in Jamaica where I live....but for me it works. When I take it, it doesn't cause me to feel that tired, in the days at work. Talk to your doctor about it, and work out something that you can take for the fatigue cause trust me, the fatigue can be such a pain :!: :mad:

laurid8967
06-07-2008, 04:33 PM
Hi all -
Its been a while since this post, so Im not sure if you are still reading it, but here goes anyway!! I think that the fatigue has to be the most frustrating part of this illness. Not that I enjoy the pain, swelling, hair loss, rash on face, etc. BUT...at least if you're up and around, you hace SOME sense of being "part of" , you know? I get sooo depressed when Im up in my room, completely exhausted, and watching people outside go about with life. I find that I can even get angry at others out of envy for their health. I really just try to stay grateful for any days that I feel well, and do something construtive with my time when Im feeling good, you know? But, my point is, I can completely identify with the frustration of the fatigue. And NOBODY understands how bad it is unless they have it. Its like I cant put it into words that others can understand. Like "Im really tired..." just doesnt cut it!! Ayway, Im just bouncing around - replying to posts while I feel good. It makes me feel better to read others posts as well, and to know that I am not alone in this!! Take care to all - and stay steady!
Lauri

sits_inthe_corner
06-08-2008, 02:54 PM
It is frustraiting when you have to drive the point home about just how tired you are. Usually you are too tired to explain it.

I get to the point where I could be physically ill. It hits suddenly and if I dont lay right down I will throw up. That usually makes my point for me :lilangel: