New Here...

Discussion in 'Fibromyalgia Main Forum' started by jdoegen, Sep 23, 2008.

  1. jdoegen

    jdoegen New Member

    Hello everyone! I am new here, and had a question that I am hoping someone could help me answer...I was officially "diagnosed" with Fibromyalgia yesterday by a Rheumatologist. I pretty much knew this was going to be the dx after almost 4 1/2 years of going from doctor to doctor and having blood tests, etc., for everything under the sun. After talking to the Rhematologist for several minutes, she said "yes, you have Fibromyalgia. It is not life threatening, but you will have to deal with it every day for the rest of your life." Well, I already knew all of this (I have done a great deal of my own "research" on the subject). She didn't go into any explanation of what the course of treatment would be or anything like that. She just started me on Lyrica, and said she wants to see me again in 2 weeks. I am hoping that the she will go into a little more detail with me. Anyways, my question is this: I have HORRIBLE night sweats 98% of the time, and also swollen lymph nodes that will be there for several weeks, and then go away for a couple of weeks and then return. Are these symptoms also sypmtoms of Fiibromyalgia? The night sweats is what got me started going to all of these doctors over 4 years ago, and it has yet to be determined why I have them...I am seriously going crazy because my quality of sleep is nil, and it makes dealing with the rest of this sooo much worse! I did a sleep study, and the report said that I slept for 3.4 hours, waking 69 times during those hours. I apologize for this being so long, but am just so frustrated with all of this, as well as the fact that none of my questions were really answered yesterday. Thank you in advance to anyone who has read through this whole post and actually responds! I hope eveyone is having a great day!
  2. hensue

    hensue New Member

    I am so sorry you have fibro. Like you said you knew you had it. Lyrica does work for some people. i cannot take it but my doc has told me after they get on it all the side affects go away and their body gets use to it. Some people it really helps them. I pray you are one of them.
    i hope the lyrica will help you sleep.
    If not most of us take something for sleep. I take klonopin and valuim. Sleep is so important. if you sleep so much of your symptoms subside unless you overdo.
    Wish you well i am sorry you have it.
    At least now you can learn to manage it.
    Sometimes it seems to manage us.
    Good board here they will give you info.
    Welcome julie
  3. jdoegen

    jdoegen New Member

    I am only 31. I am also taking Ambien to sleep, but that has not helped with the sweating. I don't have any trouble getting to sleep, it is just my quality of sleep. I wake up completely drenched from head to toe! When I get up, you can see an outline of my entire body on the sheets and the pillow. My head, back and chest seem to sweat the is really horrible!
  4. jenn_c

    jenn_c New Member

    Sorry to meet under these circumstances. This board is about as close to a best friend I have. Ok, nightsweats, I get them once in a while. But most of the time I get cold, and once I get cold it is hard for me to warm up. It is very typicle (sp?) to have rotten sleep. Also alot of people have cognative issues. My word retieval stinks, and my spelling. Never a problem before.

    I am one of the lucky ones that Lyrica works for. I am up to 450 now, I take 150 in a.m. and 300 at night. The larger at night because it does make me tired. I also take celexa and temazapam at night for depression/ anxiety and they make you sleepy. Weather produces flare ups, if it rains, to humid, to cold, or the barometric pressure changes. Also stress causes flares.

    Next appointment with your doc, ask her to talk with you about a plan of treatment. Have you been with this doctor long? Are you comfortable with her? You might end up going to a pain clinic to treat that part of fibro. And you can still keep your doctor as your primary. I have my primary doc who I absolutely love, then I have my pain doc really awesome and lastly I go to therapy and have a med nurse there. She handles my ADD, depression and anxiety. This set up works really well for me and all of them. They are all handling what the specialize in and noone has to feel uncomfortable.

    Just make sure you stand up for yourself, do not let anyone belittle your pain and what you are going through. If one doc doesn't give you an answer find one that does. Unfortunatly with this dd (darn disease) you have to advocate for yourself. Hope this helps, Jenn
  5. SkeptikSharon

    SkeptikSharon New Member

    Hi Julie,

    I also experience night sweats, although not every night. It seems like it goes through phases, where it will happen every night for a week or a couple of weeks, and then it will stop for a while. Most recently, it coincided with my period, so I am wondering now if it is hormonally-related. However, it has been almost impossible to get my docs to check my hormone levels, since I am only 29. Recently, I was able to get some ordered, but she only checked Estriol or whatever it is called and the FSH levels, which were both normal (according to her phone call). I don't know what else it could be. Sometimes it seems to perhaps be hypoglycemia-related, although not all the time. I also wonder if it has something to do with body temperature regulation, as I get both hot and cold really easily, and have difficulty getting it to normalize.

    Anyway, welcome to the forum! =)
  6. jdoegen

    jdoegen New Member

    Thanks so much to those who have replied! I don't think I've ever been to a message board where people actually reply before! ;-)
    Does anyone know if the swollen glands could be from Fibro as well?
    When I went to the Rheumatologist yesterday, it was my first visit with her. I wasn't put off by her, but wasn't overly impressed, either. She was VERY quick with me, although she did seem thorough (sp?). I have basically been passed around from dr to dr (GP, Internist, Neurologist, Endocronologist, etc...).
  7. colorfulcolorado

    colorfulcolorado New Member

    I'm relatively new here also, about 2-3 months in but sounds like maybe CFS also. That usually goes hand in hand with FM (at least that's what my doctor said).
    Good luck with the medication you are taking. Have a great day also!
  8. gapsych

    gapsych New Member

    Hello!!! Welcome to the board.

    Jdoegen, are you on an antidepressant. They tend to make me have night sweats. How about your thyroid?

    I would bring this up at your next appointment.

    Take care.

  9. wendysj

    wendysj New Member

    Hi Julie!

    I have been through the doctor merry-go-round too. When I was first diagnosed with CFS and FM three years ago, I was having night sweats like crazy. I also had the swollen, tender lymph nodes. I even had two lymph nodes removed because the ENT thought it could be lymphoma. It wasn't, luckily. I also had a low grade fever during most of that time. Check yours when your lymph nodes are swollen, you may have one too.

    Unfortunately, there's nothing they can do. My lymph nodes still swell from time to time. When I'm feeling very fatigued and achy is usually when they swell.

    I have seen other people post this same question about lymph nodes before. I think you can do a search for them.

    Welcome to the message boards! I'm relatively new here and I've seen lots of great info.

    Good luck!
  10. jdoegen

    jdoegen New Member

    They recently put me on Cymbalta, but I had the night sweats foor over 4 years before trying this. They said that my thyroid was on the borderline for hyperthyroidism, so they re-tested it and apparently it came back in the "normal" range. I thought that sounded a little off anyways, since i have NO energy, and am definately not losing weight ;-). I just don't know what it could be, and since none of the doctors can figure it out they just keeping passing me off to other doctors! UGH!
  11. vannafeelbettr

    vannafeelbettr New Member

    Welcome to the boards

    Have you ever had mono?

    The Epstein Barr virus causes swollen glands. That is the virus that causes mono, and it stays with you for life. The virus can lie dormant for years and then have a flare up, and I believe the virus lives in your mouth/neck gland area.

    You could get bloodwork done to confirm if you have Epstein Barr, even if you never had mono, as you could just be a carrier.

    Good Luck!!!
  12. jdoegen

    jdoegen New Member

    As far as I know, I haven't had Mono, but I will definately ask my dr about doing a test for Epsteind Barr. Thank you!

    Someone mentioned that the sweats could be related to hormones, and that was actually our first thought when all of this started. We tested the levels, and everything came back fine. That was 4 years ago, and I believe that they have checked them a couple of other times throughout the last couple of years, but I might have them re-check again, as I think it has been a while!

    For the person that said they take a Xanax right before do you go about getting your dr to prescribe that for you? I always feel like they think I am a druggie when I ask for medications-especially pain meds and Xanax or things like that. I made the mistake of asking my Rheumatologist what I needed to do about getting my pain meds refilled when I was at my initial meeting with her-I asked her if I should get them through her, or continue to see a pain management dr or what, and she immediately said that I don't need to be taking that much, etc., etc. I tried explaining to her that I have been on the same dosage for over 2 years, and she still didn't act too interested. I don't want her to think that the medication is the only reason I am seeing her, but I also want to be able to function! Sorry I've rambled so long, I just am so confused about all of this! Thanks again for everyone's time and replies! It really means a lot!
  13. cordy250

    cordy250 Member

    yes, I have night sweats, but I also just seem to have very poor thermoregulation. I will be chilled when I shouldn't be and then incredibly uncomfortably warm and break out in sweats at most inappropriate times.

    I have to be careful when working outside in the winter. Sweat can kill you when you are out in the elements in the dead of winter although I am not out so long that it becomes dangerous.

    As for sleep, well, sleep would be nice.
  14. jenn_c

    jenn_c New Member

    Re: pain meds and xanax. I get my xanax and other anxity/depression meds from nurse at my couselors office.
    My primary doc at first tried to handle my pain meds. When wecouldn't figure one that actually worked. So he sent me to a pain doc and he is wonderful. Is this something your primary can do for you? Hope it helps. Jenn
  15. misskoji

    misskoji Member

    Sorry to meet you this way, but I'm very glad you've found this place. It's wonderful.

    I'm 33 and also experience night sweats. It also interupts my sleep, and like you, is mostly in my head/neck/shoulders/chest region. Almost as if the top half of my body is at a different overall temp. then the rest of my body. I also experience sweats during the day with no or little cause.

    It really sounds like your rhuemy is not receptive to you and your needs. It can be one of the hardest battles we fight, to find a good doc, but they are out there, just keep trying.

    With your swollen glands, it really does sound like a symptom of CFS. I also have CFS, and as another poster mentioned, the two seem to go hand in hand. Try and take your temp when this happens, you will probably be running a low grade fever, another symptom of CFS.

    As far as asking your doctor for specific meds, I have the same fear. And in general, they are taught that if a patient asks for a specific medicine, to be leary of drug seeking behavior. However, the way I got past that hurdle is by telling my doctors that I belong to a support group and get advice and reccomendations from other sufferers.

    Take care!
  16. lgp

    lgp Well-Known Member

    Welcome to the boards!! You have found a wonderful place here with friends who will listen and can empathize with you.

    I started with this illness like you with night sweats that were terrifying me and sporadic swollen lymph nodes. The night sweats have diminished for the most part, but the swollen lymph nodes start up whenever I go into a flare--even the slightest.

    I finally got the most relief when I accepted my rheumatologist's theory that my pain and associated symptoms would not diminish until I fully restored my sleep pattern. Reluctantly, I went on Restoril (I had rejected the suggestion of Lyrica) for sleep, and within a week, my sleep pattern restored and I felt like a new, pain-free, fog-lifted person. I am no longer on the sleeping pills and, for the most part, sleeping fairly well. Maybe you should discuss restoring your sleep pattern with your rheumatologist.

    I hope this helps you somewhat. And don't worry about long posts--that's what we're here for!!


    [This Message was Edited on 09/25/2008]
  17. robin1667

    robin1667 New Member

    welcome julie,
    Their are many things that can cause night sweats.I hope you figure it out.I had them day and night.
    I also had a sleep study done finally. Since getting my machine the sweats have gone completely away.Thank goodness!Do you have one? I have not been able to dream yet or at least be able to remember them if I do.Hopefully that will come in time.Don't get frustrated,but keep trying to figure it out.There are alot of informative people here to learn from and what may work for some may not work for others.Wishing you wellness! Hugs, Robin
  18. jdoegen

    jdoegen New Member

    lgp-did the Ristoral help to dimish your night sweats? I firmly believe that if I was not sweating at night, and could get some quality sleep, that I would feel so much better and wouldn't have near as much fatigue and achiness. I just can't figure out how to get rid of the da*# night sweats!!! I am currently on Ambien, Lyrica and Cymbalta, and none of these are helping with this problem. The Ambien does help my quality of sleep at the beginning of the night, but once it wears off, I start the sweating again...UGH!!! Thanks for your reply!

    robin-I did have a sleep study done, and do not have sleep apnea...durning the study I slept for 3.4 hours and woke up 69 times! My doctor does not seem concerned with this at all, although to me, it seems like an awful lot of disrupted sleep! I just don't know what to do anymore, and seriously feel as though I'm losing my mind!!! Slowly but surely...Thank you for your reply as well as everyone else!!! I really appreciate EVERYONE'S responses!!!
  19. robin1667

    robin1667 New Member

    That sure is alot of disrupted sleep. Glad you don't have the apnea though. Your Dr. didn't suggest any other kind of test?! Are you having pain at night,are you stressed? Do you know why you are waking up? Depression? Some meds. can cause loss of sleep and sweats. Have you had your vit. D levels checked? Menopause-I don't know how old you are,but some women start it in their 30"s, I did.
    I sure hope you find the answer. Those sweats are terrible.I would awake and feel as though I just stepped out of the shower then dry off and go back to sleep uncovered and wake again freezing, all night long. During the day it would just hit anytime.I understand your frustration with it, it drove me bonkers and was embarassing when I was in public. Hopefully mine won't come back,time will tell.Take care,Hugs, Robin
  20. mlrarr

    mlrarr New Member

    I have swollen lymph nodes also!! I got the dx of fm then after the lymph node and YES I wake up (if I ever go to sleep) sweating!! I have a fever of only 99-100 off and on.So they did blood test as well as other test and said cfs.
    I thought well one more thing. You will find all kinds of info here as well as people from everywhere that understand and want to help you get through this terrible stuff.
    Glad to have you on board!!
    Hang in there.. and not with a rope LOL LOL!!