Raynaud's disease, or a symptom of CFIDS/FMS?

Discussion in 'Fibromyalgia Main Forum' started by DeborahLynn, Jan 25, 2010.

  1. DeborahLynn

    DeborahLynn Member

    I am having a terrible time with the cold this winter. My fingers, toes, and nose get numb and painful at the slightest decrease in temperature. I have grown more and more sensitive to the cold over the years since the onset of CFIDS/FMS, but this year it is downright unbearable.

    I was wondering if it is from the fact that with CFIDS, there are less capillaries than in a healthy person and therefore reduced circulation, and if my numbness and pain is from that, or if I have Raynaud's disease. My toes turn whitish, but so far my fingers haven't. Can there be different severities of Raynaud's, or is this just my CFIDS/FMS?

    Do any of you have such trouble with the cold? I live close to Chattanooga, TN, and the lowest temps so far this winter have been in the upper 20's (for a week or so). Right now it is in the 30 - 40's, and my toes are very numb and painful. I feel like I need to move to a warmer climate, but I don't want to leave my family and friends. I can't wait for spring! This cold is killing me!

    I appreciate any responses; thanks!

  2. campbeck97

    campbeck97 New Member

    Hi Debbie, I have this to, just started this winter. My nose is the worst gets soooo cold and my feet and hands also.I havent really noticed a change in color much, but my Dr. said at my last visit its probabely Raynaud's and said she wasnt concerned unless my feet or hands turned white along with the cold and numbness. Do your hands hurt you when get them in cold water or take something out of the freezer?My really do almost instantly. Sorry you are suffering with this also, like fibro not enough , right? Something all the time it seems.God Bless you just wanted to let you know others with fibro have it too.Take care Becky
  3. DeborahLynn

    DeborahLynn Member

    I guess this means I'll just have to grin and bear it, for the time being. My Mom and Dad are snow birds - they live up north in the summer, and in FL in the winter. I wish I could migrate with them, but I can't take my children and hubby along. My husband doesn't do well in hot weather... I'm thinking seriously of visiting relatives in FL for a month, if they'll have me for that long. But I have no $$$ to take such a trip, and I agree with you - the pain of such a trip will be be bad. I can't hardly stand a trip of one or two hours, much less ten or twelve.

    I guess I'll invest in some of those hand/feet warmers they sell at WalMart, keep wearing multiple layers of clothes (you should see me with my leggings, jeans, t-shirts, sweaters, a dress over that, a leather jacket under a big denim coat, scarf, gloves, ear warmer, hat - all at the same time! I feel like the Michelin man!) and stay indoors as much as I can. But I still get numb inside my house. We keep the temp at around 68 or so; I'd like it warmer, but last month our electric bill was over $200 - can't keep doing that!

    Didn't I meet you at a support group here in Chatt.? Our church is starting up a group in McDonald/Apison area very soon, and you're invited if you'd like to come. I can e-mail you the info if you're interested (provided I can find your e-mail on your profile, or get it somehow).

    God bless!

  4. DeborahLynn

    DeborahLynn Member

    Yes, my hands hurt in the cold water or cold air of the fridge/freezer... I guess it must be a milder form of Raynaud's, or something like it. I'm not one to try meds, so I guess I'll try to find a natural treatment. Like moving south, or better yet, southwest. :)

    I've read posts on this board from people who have found relief moving to a warmer, drier climate, like Arizona. Maybe that's where I should look into. (It'd be dreaming, anyway, but it can't hurt to look into it!)

    Thanks so much for replying! I feel better just knowing I'm not crazy, that others are surviving with these same symptoms... God bless you too!

  5. layla1954

    layla1954 New Member

    Hi Debbie, maybe it was me you were thinking of - we met at a support group in Ooltewah a while back. I dropped out of the group b/c I had a really nice, several-month remission.... I've had ups and downs since then but all in all, not as bad as in the past. I'm pretty regular with my supplements and make a point of getting lots of rest (i.e. I just come home from work and go to bed, a lot of the time).

    I hear you on the cold and the high cost of keeping the house warm, my EPB bill this month was $170 and that was with basically only heating one room. I work full time, and when I'm home just stay in the bedroom so I don't have to heat the rest of the house.

    Today even though it's not all that cold I'm sitting in my office at work with my heater on and my coat on and my fingers and NOSE are still freezing. For me, damp cold is worse than dry cold just like heat with humidity is worse than dry heat.

    FWIW, I started on LDN last month and I can tell some difference - no dramatic change (not yet anyway) but definitely less morning stiffness, my energy level seems to be up a little, and unexpectedly my mood has improved. I'm not having as much muscle pain as I usually do during cold weather. I've had no side effects except a little sleep disturbance the first week or so, but now I'm sleeping really well. My PCP prescribed the 50 mg tablets and I dissolve them in water and take at bedtime as others have described elsewhere.

    Anyway.... stay warm if you can! Hope you get to take that trip to Florida. I can just imagine lying on a warm beach right now.... sound of the ocean.... sun beating down!

    Lee Ann
  6. DeborahLynn

    DeborahLynn Member

    gb66, it seems to me that Dr. Orquia and I learned about CFS together; I would describe the different symptoms, bring him articles, write him letters, etc., and he accepted what I brought and described. I've heard him interact with other patients, and he is knowledgeable and caring with patients of all ages. He is young, probably the same age as me (40) or even younger. He is cheerful, and he always calls me Ma'm, which cracks me up because I'm no oldter than he is! I know he does that to show courtesy and respect. He is very personable. I really, really like him.

    When I first went to him, he did every test he could think of, and referred me to an endocrinologist and rheumatologist and an ENT doctor. He didn't write me off as a hypochondriac or a hysterical female. I appreciated that. Plus he takes his time answering all my questions. Can you tell I like him as my primary physician?!

    I hope you like him, too. He is located in the new Publix grocery store/strip mall, and his address is 5958 Snow Hill Road, Ooltewah.

    I am going to ask the leader of my FM support group that meets at Bayside Baptist what she thinks about putting our support group live via the internet... that would be so great!

  7. DeborahLynn

    DeborahLynn Member

    I'm so glad you're doing some better! The Ooltewah support group folded months ago, as the leader (can't recall her name atm) became too ill to keep running it.

    LDN is low dose ? I saw it recently, but can't remember the name. I'm glad it's helping! Any little relief we can get is good.

    I can empathize with coming home and going to bed for the night - I'm not able to work, but I crash many days around 4 or 5 p.m., and stay there until 6 a.m. I don't necessarily sleep the whole time; I just get to where I can't be up anymore, my whole body just quits on me, and I have to go lay down or collapse. Many days I have to rest in the morning, too.

    It would be great to see you again sometime! You were a great help and encouragement to me. I was feeling so bad, and to see you share the things that has helped you gave me hope that I might find things that help me, too. Plus, you were working on top of having FMS, which is a very difficult thing to do!

    I wish we could all go to FL together! Lord bless, Debbie
  8. kbak

    kbak Member

    I've had Raynaud's since I was a teenager, long........... before I ever had CFS. Tho I think it probably can also be cause by this DD. I have terrible problem's with the cold, but then I have problem's with high heat also. I'm sure it's a malfunctioning thermostate! To bad we can't change those out like appliances.

    Take Care,
  9. znewby

    znewby Member

    Raynauds is such a mystery. I read some scientists consider it a disturbed immune system. But if it is part of the package of cfs/fibro then it may be initiated by xmrv? Wish we had more answers.
  10. DeborahLynn

    DeborahLynn Member

    Seems like there are a cluster of diseases that often come together with CFIDS/FMS. Thanks for giving me a clearer idea about Raynaud's. So sorry you've had to deal with it since you were a teenager!

    My good friend gave me a present last night - a pair of warm boots with a fuzzy warm lining! Thank God for compassionate, caring friends! It helped my feet warm this morning out in the 29 degree weather... I hope and pray we all find ways to help cope with the symptoms of our diseases, until they are either cured or healed!

  11. jess

    jess New Member

    Hi DeborahLynn, my daughter and I have CFS and I also have Bartonella. My daughter has the same symptoms as you do. She has had them since she was a child. She was tested for Raynauds but it was negative for Raynauds disease. However Raynauds can be a secondary disease which it probably is. I think they said it was Raynauds syndrome, caused by something else. Anyway, the Dr. suggested a high blood pressure medication to cope with it. My daughter refused so another Dr. suggested magnesium. This didn't work although all of us need magnesium. I was wondering if something like Lumbrokinase would help. this is a natural blood thinner with no side affects. I take it myself for Bartonella. Wishing you the best and health, Jess
  12. Aberlaine

    Aberlaine Member

    Hi Debbie,
    I don't come here often, but your title caught my eye. I've never been officially diagnosed with Raynauds, but the first two toes on each foot are blue most of the time. I'm beginning to lose feeling at the tip of my large toes.

    I've officially got fibromyalgia and suspect I have ME/CFS, too. I've spoken to my podiatrist and he just told me to keep my feet covered at all times. Didn't seem too concerned. I live in upstate New York, so we do get very cold weather. Most of the time I use thick socks - thermal or wool.

    I've guessed that this is a circulation problem, but can't seem to figure out what to do about it. Good luck.
  13. DeborahLynn

    DeborahLynn Member

    My friend told me that her father has a lot of trouble with terribly cold hands and feet... his doctor told him to take Niacin, that it will dilate capillaries. She said it helps him. I think I might give it a try.

    I've taken magnesium before, and it didn't seem to help with the coldness, either.

    Thank you for the info!

  14. DeborahLynn

    DeborahLynn Member

    Maybe another doctor would be able to help you; it doesn't seem like your podiatrist was very helpful.

    I have some nice wool socks, and they help some. I am going to buy some more as soon as I can! They are much more warm than any of my other socks. My friend told me about some feet warmers that can be found at WalMart; I might try them out, too.

    I pray you find relief and help!

  15. DeborahLynn

    DeborahLynn Member

    If I smoked, I'd pick right about now to quit! That's a scary testimony! It's sad to see how addictive nicotine is.

    My father was able to finally quit after years of smoking. He actually came down with a bad case of bronchitis, and couldn't breathe. He said it was horrible, and he couldn't smoke even if he tried. After healing up from that, he didn't go back to smoking. It must be nightmarish to not be able to breathe.

    Even if I'm around second hand smoke for a few minutes, I can feel it affecting me right away. It makes me feel horrible!

    Thanks for your reply; God bless!

  16. DeborahLynn

    DeborahLynn Member

    I pray Dr. Orquia works out for you! I need to purchase a webcam too... I'd like to try an online support group also.

    I wonder if I've ever met your daughter; I was in Memorial hosp. in January of '09. I think I was a neuro patient, as I was having problems with complex partial seizures.

    God bless!
  17. DeborahLynn

    DeborahLynn Member

    Hopefully we can get some answers soon! It sounds like it's part of the whole mess we're in with CFS/FMS...

    Prayers for cures,

  18. layla1954

    layla1954 New Member

    Looks like we're in for a rough weekend weather-wise around here! I'll probably spend most of the weekend huddled up in bed with my cats. They do keep my feet toasty, lol! Stay warm if you can, and take care if you have to go out tomorrow.....

    Lee Ann
  19. DeborahLynn

    DeborahLynn Member

    It's so great to have friends on here!

    It looks like the Canadian definition is better than ours - I've never seen any portion of it before. It seems more complete. Thanks for posting it!

    Lee Ann, I had a terrible time getting home this afternoon around 4. It took over an hour to go 8 miles, and I slid once. But thankfully I didn't slide off the road! I had to park my car at the bottom of my driveway and walk home (.4 mile) because I couldn't get the car up the hill at the beginning of it! I was so thankful for the new boots my friend had given me this week.

    I don't know where I got the energy to walk home; the adrenaline from the sliding left me weak as a ragdoll. But thank God, my daughter and I are safely home! :) I am going to follow your example and stay in and stay warm! Thanks,

  20. DeborahLynn

    DeborahLynn Member

    I have had the tips of my fingers and toes turn white, with the tip of my left middle finger turning very blue (this happened yesterday). The way it felt triggered my memory; I now remember it happening once or twice before (in addition to being chronically cold).

    I went to Dr. Orquia the day before yesterday, and showed him my white, ice-cold toes. (The reason I went to him was that I had a severe weak spell this past Sabbath so that I almost crumpled to the ground in a heap. I'm still extremely weak now...) He seemed concerned about how ice cold they were. I told him the toes are almost always like that.

    Dr. O drew four vials of blood to test a bunch of stuff, and I go back to him this coming Tuesday. I'll tell him about how the white fingers and toes match the pictures I saw online. I wish I remembered it in time to tell him the day before yesterday! Slow brain... brain fog as thick as pea soup...

    Anywho, just thought I'd post an update; I pray blessings from above for you all!