Hi my friends!!!!!

Discussion in 'Fibromyalgia Main Forum' started by kadywill, Mar 22, 2003.

  1. kadywill

    kadywill New Member

    I am sorry to have been out of touch for a while, but I am currently suffering from my old Chronic Angioedema and Urticaria and have been miserable. I am still out of work due to the Spinal Stenosis and going to PT about three times a week. Right now, I am getting water massage from a big firetruck-like hose in the PT pool. The therapist aims the hose/water at my fascia and muscles to get rid of the adhesions in my fascia and it helps. The Myofasia pain at the band of ropy, fibrous areas on the back of my things is the main thing I want to be worked on. These are trigger points and I see a great deal of improvement. I am not compliant about my twice a day stretches at home, though, due to the extreme fatigue. I didn't really know I had CFIDS, but I do, and between the back and buttock pain and the tender points from the FMS and the insomnia and the Chronic Urticaria and Angioedema, I stay in the bed most of the day. I cannot stand or sit for more than thirty minutes a day. I am not driving now and I cannot shop. I am not cooking and I cannot think of any foods that are palatable for me. I did eat some tomato soup this evening. The bottoms of my feet are very swollen and so tender I can hardly walk. I have swollen hives at all the areas of pressure from my clothing and I itch horribly. I take many antihistamines and histamine blocker meds and am much more weak and tired than I have been. My hubby is doing the housework and it is NOTHING like I am accustomed to doing. I am more confused. My husband was sent a questionairre from SSA yesterday and I read his answers and was shocked. On this form, he admitted to having to remind me to take my meds, take a bath, comb my hair, eat and drink water. I hadn't really noticed it had gotten this bad, but it has. I worked as a nurse up until November!!!!! I am so frightened and I am terrified that it will get even worse. I am now needing PASSIVE range of motion exercises from another person as I can hardly lift my arms and legs. I had to d/c the Neurontin the Neurologist had started me on a couple of months ago. When I stopped, I was taking 300 mg. in the morning and 600 mg. at night; I was very dizzy and confused and I don't think there was pain relief.....who knows, though, I WAS very confused. I am quite dissappointed in my doctors. I feel like I'm getting nowhere. My pain isn't really relieved, I am getting weaker, I am having to cancel a lot of my PT appts. due to fatigue and my hives and swelling. When I have these breakouts, any pressure to my skin exacerbates my symptoms and I get MUCH worse. I am not driving often now because the meds are making it dangerous PLUS the sciatic/piriformis pain gets much worse when I ride or drive.
    Does anyone who has MPS have experience with the trigger point water massage instead of the manual trigger release? It is less painful for me and when I rub the back of my thighs, there is less pain now. I don't don't how many more PT sessions I can go to, though, due to $$$ and my fatigue and inability to get to the appts. (My insurance pays, of course, but the rest is left up to me and even that is hard to pay with my hubby and me being out of work.
    I spent three hours filling out those SSDI papers today and I can only hope I did well on them.
    Please pray for me!!
    With love,
    Kady
  2. selma

    selma New Member

    I'm here praying too. Love, Selma
  3. kadywill

    kadywill New Member

    Vickie and Selma. I need to vent now and then, don't you? Prayers are so appreciated and I KNOW thry'll help!
    Love,
    Kady
  4. blast

    blast New Member

    Sorry to hear all of this and I will be praying for you and I do hope you at least get some relief from the PT.
    Sorry to hear you are so fatigued, it can get so overwhelming at times can't it?

    I hope all goes well with the SSDI, and it comes through for you. You deserve it! :)

    God bless you,
    Sherri
  5. Shirl

    Shirl New Member

    So sorry to hear you are having all these problems. When it rains, sometimes it pours, BUT the sun does come out!

    I will be praying for you and your husband also.

    You take care, and if you can, drop in and let us know how you are doing.

    God bless hon..........

    Shalom, Shirl
  6. epicurean

    epicurean New Member

    you know we are all sending you our best wishes,and prayers that you are soon feeling better!!!Keep us updated on how your doing.I will send you a message soon-seems as tho I must,after you and Sandy,be queen of the BUTT CLUB.
  7. joannie1

    joannie1 New Member

    It is SOOO good to hear from you. You have been in my thoughts so much lately. I have wondered where you have been and if you were okay. I am terribly sorry that you are having such a rough time right now. I will pray that things start looking up for you and that hopefully you get back on your feet again to be able to function a bit more then you have. i am truly sorry your in such pain. I have missed you so.
    Big soft hugs to you and a prayer is being sent for you to see better days ahead.
    Love and miss you much around here,
    joannie
  8. ozgran

    ozgran New Member

    Don't know how else I can help you. But just wanted to say you are in my prayers too. Love Ozgran.
  9. darlamk

    darlamk New Member

    Kady but I am so sorry for all you are going through now. That sounds like some interesting PT water treatments...does it cause more pain? You have had so much to deal with and now to have the angioedema & hives flare...that is the pits! I remember that SSD paper work pile...(remember to keep copies of everything) Its a long row to hoe huh? Best of luck and remember my prayers are with you too! God bless!
    Take Care,
    Darla
  10. kadywill

    kadywill New Member

    friends, thank you so much for your replies!!! Shirl, Joannie and Ozgran, thank you for the much-appreciated prayers~~this helps the most of anything and I do strongly believe in the value of prayer!!!! Thank you.
    Epicurean, I have really missed you!! Yes, Sandy and I will have to step down and let you be the President of the Butt-ies club. I have to say that I have found an excellent piriformis stretch that completely takes the pain away everytime I do it!!!!!!! What a blessing that is!!!!!
    Darla, the PT is wonderful and the water hose doesn't hurt as all unless the pressure is too high, (and they'll adjust it when it burns) or if the hose isn't shot directly at the muscle. I love it and when I rub the side/back of my left thigh, the pain I have always felt there has greatly diminished and I know the water hose is the reason!!!! The bad thing is, now that I'm in an angioedema/urticaria flare, I can't be in the water (chemicals) or have the pressure of the hose or PT massage, so I've had to cancel appts. until this flare is over. I hate it, but the angioedema/urticaria is much more serious right now and pressure to my skin makes it much worse. You know, I've gone a lifetime of ignoring my fascia and it sure is nice to know what was causing all that pain~~~do you guys give your fascia a passing thought during the day??? LOLOLOLOL
    Anyway, it is now clear to me that work is in my past and not my future and this really depresses me. Note to all of you~~~~~do NOT let your career be so important that you think it is what "makes" you!!! I thought all of my self-worth was determined by my nursing career and now it's gone. It's like a beautiful young man or woman who is aging and finds they were nothing but young and beautiful~~what a shame. Now, I have to learn what I still am. My children are grown and on their own. My husband is having to do all the things around the house that I prided myself on. My memory is that of an early Alzheimer's patient. I look like a street person. The only thing I can still do is pray for others and myself. That's good.
    With much love,
    Kady
    [This Message was Edited on 03/24/2003]