Madwolf........

Discussion in 'Fibromyalgia Main Forum' started by Amyd, Jul 16, 2003.

  1. Amyd

    Amyd New Member

    I am writing to you because I feel like you are very well informed about FM. I am 32, a teacher and a mother of a 4 year old. For the past 3-4 years I haven't felt well. It started with flu-like aching, sore throats and being "tired" all the time. It was always brushed off as being a new mother...blah, blah, blah... Then a year ago, I started having more frequent episodes of "flu" (although I don't have the flu}. I also had back problems and my legs and hips ached at night. I am also sooooo tired I can't function some days. Now I have noticed that when I overdo it, or am stressed, the next couple of days I am sick. Flu-like aching, sore throats, back pain and hip and leg pains. It starts at the top of my butt and runs down to my ankles only on the backs of my legs. I sleep with a heating pad every night. I changed doctors and he ran some routine blood work and my RF came back positive. I was sent to a rhuematologist and he is doing blood work right now. I was sent for a bone scan and nothing showed up. I am waiting for my results. He doesn't feel that it is RA. I do have infrequent Raynaud's. Does this sound like CFS or FM to you? He mentioned vasculitus?! From reading the posts it sure sounds like I fit into the FM catagory. With FM do you feel bad always or do you have good days and bad days? For example, today I feel great, yesterday, I felt like crap.. I was just wanting an "expert" opinion while I am waiting for my "expert" opinion!!!!

    Thanks for reading this and I am sorry that it is so long!!!
  2. Amyd

    Amyd New Member

    just bumping myself up!!!!!
  3. klutzo

    klutzo New Member

    Yes, we have good and bad days with FM.
  4. crissyfamily

    crissyfamily New Member

    have you been treated or treated anyone with the heparin and abx...and if so what has been the outcome?

    thanks so much...family is all on heparin for 4 weeks starting today and on abx for 3 1/2 months....started lumbrokinase a week ago and take transfer factor but dr. berg recommended another one and our doctor has ordered. Never did feel like the patient of Dr. Berg who describes part of her progress on one of his sites....but this week husband and i are both very lethargic and we just redid the cfids test panel and lyme panel a few days ago to see if the little critters are coming out of hiding yet...

    well, just trying to see how others felt and if they felt any better after treatment. worried about my 2 teenage daughters who got his last summer also but w/min. symptoms yet....they are on all the same things as us except we are on heparin shots and they were on liq. oral heparin but our dr. talked w/dr. berg and carol ann ryser and they recommended that and ordered some heparin in i think is what is called a trochea (it is like jello kinda like and put it between gum and cheek area and don't drink water 15 minutes prior or after) it is made by a compounding pharmacy in california....

    well, i think i'm rambling.... so i'll go now. P.s. madwolf, read about your visit with your son..how wonderful for both of you...

    take care crissy....
  5. crissyfamily

    crissyfamily New Member

    bumping...thanks

    crissy
  6. Amyd

    Amyd New Member

    I really appreciate you! I love this board. I have learned so much just by reading the posts. It sounds so familar to me. It's nice to have other people that understand you! Thanks everyone!!!!!

    Amy
  7. tandy

    tandy New Member

    Its odd to read this post of your tonight!Let me explain. For the last couple weeks i've had increasing leg pain, very achy,sore feeling and LIKE YOu, right down the back of the legs...the left one is worse.(my legs feel heavy too???)after being on my feet for more than an hr(maybe alil less)the pain gets worse. Well,I was researching the cause or possible cause myself and Vasculitis is what I'm thinking. (after reading alot online)and in a medical guide I own at home. Whats the treatment for vasculitis.Did your dr. say? and whats it caused from? By the way I have fibro~ I've had it for many yrs,but the leg pain is relatively new. Do many FM'ers have this kind of leg pain? Thanks anybody who can anwer.
    :)
  8. tandy

    tandy New Member

    looking for a reply to my questions on this thread~Vasculitis??? :)
  9. sujay

    sujay New Member

    Yes, Crissy, I've had lot's of success with the approach Dr. Berg and Dr. Carol Ann Ryser rcecommend. (Your doc must have met them both in Phoenix. Glad she could go.) I can't tell you what a pleasure it is to see patients who were once bed-ridden coming in for run of the mill problems only.

    Amy, I agree completely with Madwolf. See if your doctor is willing to look into the possibility that you might have a variant of Anti-phospholipid Antibody Syndrome. Dr. Berg does the best job explaining it to professionals, but he liked my description likening the attack by stealth pathogens to guerrilla warfare. Let me know if you have any further questions after doing the searches Madwolf recommended. (I always look for Jellybelly's posts, too. She's really pulled a lot of pertinent information for us to review.)

    Good luck in your search for better health. I'm becoming less hesitant about using the term cure, which I think will be within our reach once enough clinical research has been done to convince all the insurance companies to let us do the testing we need to properly monitor all of our patients. Once they realize people can get well they will see that it's much cheaper to let us treat them properly in the first place.

    Hang in there, and let me know if there's anything else I can do to help.

    Best wishes to you both,
    Sujay
  10. Amyd

    Amyd New Member

    This is all new to me! I'd never even heard of vasculitis until he mentioned it. I am still having tests run. My appointment is on Tuesday the 22nd. I will let you know what he says. If it is vasculitus I will tell you what treatments, etc.... there are. After researching, I have found that there are different types of vasculitus. So who knows?
    I don't have great circulation in my feet anyway. After hanging down for awhile (like on the exam table), they turn blue!! I mean really blue!!!! Does yours?
    Does your back hurt?
    I'll let you know what I find out!!!!

    Thanks!!
    Amy
  11. Amyd

    Amyd New Member

    My legs kill me at night when I lie down. They hurt when I walk a lot but mostly at night. I sleep with a heating pad most nights!!! Like a tooth ache. My hips (butt) hurts like they are bruised. Sound familiar?????????????
  12. crissyfamily

    crissyfamily New Member

    thanks sujay, just have to be more patient withi this treatment....

    thanks for the support...

    appreciate it and take care

    crissy
  13. tandy

    tandy New Member

    and day...!!They hurt like a sob!! My feet too. and ankles. just another "now what, symptom".......Oh I hate this DD! I get prickly feelings in one leg and foot??My toes are always cold~(raynauds) no turning blue:(
    Please let us know how you make out~