Need Information and Input Please


Normally on here I just spout about whatever I think about. Today though, I am asking for your input. I have been in the middle of a really bad flare. Still flaring right now. I was wondering if any others have these symptoms… the first two are new to me so please give me input…

involuntary muscle movement, like you watch your muscle move in your leg but you did not do it

hands going numb at times with no warning and unable to grasp something (parasthesia?)

profuse sweating

extreme fatigue

migraines almost daily right now

joint pain and swelling

and blisters in my mouth

Ok, I know some of you are thinking that I should know that some of these things are normal during a flare, and I do know that, but daggone it, lately things are spiralling and it is getting rough. The seas are far from calm and I am sinking into depression as well.

Any suggestions? What do you do when you just feel like you are at the end of your rope?


6 thoughts on “Need Information and Input Please

    • Yes and they give me hope whn I ned it most! I have nine girls from 16 to 1 in age and one boy who is 5. They are my lifelines when I am depressed, I mean, who can be depressed when they are smiling that beautiful smile and saying they love you?

  1. I get all of those except the second one, especially when I’m in a flare. The only thing I can usually do to distract myself is sleep, talk to friends, and watch my favorite TV shows/movies on DVD/Netflix. I use orajel or orabase for the blisters in my mouth (And stay away from crunchy stuff that can get caught and pull the skin), fiorecet (sp?) for the migraines (a little peppermint oil on your temples helps a lot too), and ibuprofen 600mg (3 advil) for the joints. Also, soaking joints in epsom salt and warm water usually helps.

    The best thing to keep my spirits up is to be with friends and loved ones. I hope your flare ends soon and feel free to e-mail me if you ever want to talk! My contact info is on my blog, feel better!

    • Dani! Thanks for the encouragement, just when I needed it. I am seriously getting upset that I cannot seem to get answers yet more symptoms are appearing and I am getting frustrated because right now I am only seeing rheumy. Neuro is hit and miss and I am seriously thinking of changing the guy. He has done all the right tests, but I have not heard a single word on the results. Argh! I use cold packs for my face when I have a migraine. For some reason, cold helps more than heat. My packs can be cold or hot so I use what works. I am on so many meds right now but stupid body will not respond to the ultram hardly at all. I get better relief from tylenol. Thank youfor answering my query. You know, sometimes I just need to put it out there and try to unload it (the negativity and stress). It usually helps but lately I have been battling depression so it makes it harder to try. I may take you up on your offer to email you too. Thank you so much!

  2. Hi Jen, I hope I don’t come across as patronizing. You are well read in many aspects of the illness. The symptoms you are mentioning need to be treated asap by your rhuemy. Make an appointment please. The sweating is a sign of low grade fevers and inflamation. The doctors can help that. Good luck and hang in there.

    • Thanks Joe! As a matter of fact I see him on Monday. I need to see the neuro too for this crazy numbness in my face, hands and feet. Looking like more neurological manifestations are presenting themselves. Ah well, I have just been in this flare for so long now that there are days I feel like giving up. Then I see one of the grandbabies and forget that depressing thought. You were not patronizing at all. Sometimes I just need to put it out there and then let it go, ya know? It helps me to vent it then forget it. Thanks for your insight!

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