Coma sleep, with a side of hot burning legs please

Coma sleep, with a side of hot burning legs please

I don’t want to order that but it’s been on my plate now for a few months.  I’m starting to get really discouraged and depressed.  My Rheumatologist wanted to see me the next time my hands blew up.  (they actually blow up, it’s gross) So anyway, I’m flaring really hard and always as a precursor to a flare, my knuckles get really red, like shiny red, my eyelids become really swollen on top and hang over my lids (gosh I feel sexy just typing this…) and then my hands start to split open all over the place.  Sometimes they swell in my sleep, sometimes not, but either way they are monstrous.  Soooo, 2 weeks ago my hands start up again.  But I forget I’m supposed to go in.  Towards the end of the monster hand I remember and call him up.  I get to see him the next day and they are pretty much healed.

He says he can still see the damage and it looks like the dermatomyositis.  Okayy.  He ran the whole shebang of labs; ANA, sed, C-reactive, Comprehensive Chemistry, RA factor, and anything else he could scribbble in.  So I call this morning to find out the results and the nurse comes on the line and tells me that Dr. wants to speak with me personally and set up a plan of action.  So I wait. And wait.  I’m thinking all of the worst things imaginable since I am such an optimist at this point in my life….why in the hell couldn’t she just tell me the numbers, she always does… finally I call and tell the receptionist I am in the throes of anxiety waiting for the call.  She informs me in an official tone that ‘Doctor is still seeing patients and cannot come to the phone. He will ring me after 5.’  Well, luckily I went back into my coma sleep so I didn’t have to smack everyone’s hands off the phone.  I so smartly decided months ago to cancel call waiting because it bugged the crap out of me whenever I was on the phone hearing that beep beep beep, only for it to be a telemarketer, or bill collector.  Right at 5 he calls and tells me that other than my ANA being positive, all of my numbers look pretty good just like last time.  He says we’re damned if we do, and damned if we don’t.  I don’t ask him what we’re damning about because I’m pissed that I worried all day for this.  He told me the plaquenil could very well be keeping my numbers at bay. Well, it’s not keeping my symptoms at bay.  I’m sick and tired of being sick and tired.

When I first came to him before I got on any meds, my numbers were through the roof and I couldn’t walk without assistance.  My PCP told me I had Lupus (prematurely based on one lab test) and my Rheumy was hesitant to say for sure what we were looking at; RA with some dermatomyositis and palindromic rheumatism thrown in for good measure.   That’s what the labs and symptoms told him.  Now he says the plaquenil is working, I’m walking much better, my numbers are low but I’m flaring more often than not.  I’m frustrated that I get a diagnosis, then have it taken away.  Again and again.  Right now I’m back to Undifferentiated Autoimmune Vascular Disease or Undifferentiated Autoimmune Disease, Connective Tissue Disease… Then it will be MCTD, then back to the early RA with dermatomyositis and so on.  Never in my life have I WANTED a diagnosis, til now, I just want to make sure I’m on the right meds for the right disease.  I don’t want any joint damage.  We tried methotrexate but it made my legs freeze and burn right down to the bone so he discontinued that but didn’t try anything else.  One thing he says he is sure of is it’s not Lupus like everyone thought in the beginning.

Is this a rambly confusing post from a frustrated woman?  Yes.  I haven’t posted much of anything lately because I have just been too sick to even want to sit down and type.  But last night I couldn’t sleep a wink after 1:30 so here I am!  I’m going to post a pic of my hands when they were on the mend.  You can see the rashy red spots, but there were no splits in this shot. I also got turned on to a video on myositis, it touches on the basics, but it’s interesting and it’s good to see someone talking about it.  And last but not least, I  posted some more photos in the Happy Snaps.  Those are cool and stress free, LOL.  Every shot I’ve gotten so far has been right in our yard.  I’m lucky to have such beautiful flowers pop up.

Today will be a better day!!

Until next time

5 thoughts on “Coma sleep, with a side of hot burning legs please

  1. Irishbookfairy,
    I am so sorry that you are going through this. It’s hard enough to be that sick and scared but then to not have support makes it all the more. If you don’t mind I’d like to send you some links to a few online support groups that have been integral to me for support and information. And I’m always here if you need to talk, just drop me a line. Let me know how your doing, ok?
    soft hugs,

  2. Hi,

    I am so sorry that you are going through all of this. However I can say with all honesty that instead of sympathy I have empathy for you because I am basically going through the same thing. Its been going on for over a year. Started with a ANA of only 1:80 with a scleroderma pattern. The next time I came in it was 1:40 so they acted like that was the end of it (small town medical minds). I would not let them. Like you, I just want a diagnosis. My hands look a lot like yours but my knuckles are a constant grayish color, I have Raynauds and my palms are shiny and kinda rough and that is spreading upwards. My monster is my feet. My legs are huge and rock hard. They ache and burn. I am supposed to go back in in December but I plan on a “walk in” tomorrow. I am not going to keep living this way. My family is so non-supportive, I had an appointment with a scleroderma specialist in Houston and my parents and my husband were actually arguing about who was going to take me as neither one of them wanted too!! I just called and cancelled my appointment. I asked my mom if I had this disease would she make sure I went to Mayo or saw a sclero specialist and she said “well yeah I guess we would “have” to. I know how much I am a burden and chore now. Oh well, its nice to know someone out there knows how I feel. Take care and when you go for one of your coma sleeps think of me because I will probably be lyind down for one of mine also! irishbookfairy

  3. came from chronic chick blog. i do hope you’re feeling better already. unlike you, i don’t really like plaquenil. i tried it once but it does not get me better rather its the opposite. its always prednisone for me.

    btw, i would like to ask you a favor. i hope its okay if i put your link up in my blog ?


  4. I was going to suggest taking photos of your hands if or when it happens next time. Then your doc can see for himself in case you don’t have the symptoms when you see him.

    Isn’t waiting wonderful? I’m playing my own waiting game too and I’m over it! I no longer wait for test results and just take them as they come.

    Hope you feel better, get answers soon & have some pain free days.

  5. Your hands look a lot like mine. Mine are real achy. I’ve been on plaquenil atleast 6 yrs its helped with my numbers too, the hair lose is a bad affect of it or is it the lupus. We’ll have to compare hands- LOL- stay well 🙂

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