Strange flushes - anyone? - Important update!!!

Discussion in 'Fibromyalgia Main Forum' started by laspis1, Jan 13, 2006.

  1. laspis1

    laspis1 New Member

    I have been ill for 3 yrs. It all started with a parvovirus. 6 month later I was told I am not likely to recover completely. The list of my symptoms was a page long. I got started on a couple of antidepressant. In time I recovered enough to go back to work, first part time and than full time. Most of my symptoms improved, the fog lifted. I continued to have a lot of pain. That never went away. And one more thing. I have been experiencing strange flushes. They come suddenly without warning. They are similar to anxiety attacks in how adrenaline floods your body, but these make me feel week and they seem to affect my muscles. The flushes/spells/attacks(I really do not know what to call them) vary in intensity. Some are mild, some so strong I would probably call 911 if I could get to the phone. Fortunately those do not happen often. Sometimes I go for several months without one, but recently I have been experiencing several a day. They make the fibro flare up. But maybe thy are part of Fibro. Does anyone know or experienced the same thing?
    [This Message was Edited on 01/13/2006]
    [This Message was Edited on 01/17/2006]
    [This Message was Edited on 01/17/2006]
  2. yamona

    yamona New Member

    I went through the same thing for years. I thought I was losing the old mind. I had a mass in my thyroid gland and my TSH was so far below 0 it wasn't funny. The regular docs didn't catch that for years. The Endocrinolgist just looked at me and said how do you live? I was hyper for many many years and the ambulance and hospital got to know me very well. My muscles also still go bonkers and I can't walk at times. My muscles in the legs also go bonkers and I can't walk. I have had many tests. Myelograms also. How about u? Do u have a doctor? Do u see a Neurologist? Sorry for so many Questions. I hate for u to be in so much distress. I was and am still.
    Yamona
  3. laspis1

    laspis1 New Member

    Thanks for the response I appreciate it. I have thyroid anti bodies as well as a small mass. It was biopsied three times, but it came back non malignant so they leave it alone. In my mind the flushes are caused by either thyroid or another gland, like pituitary. Sth is releasing some kind of hormone in these excessive amounts that results in a flush like sensation. Until I figure out what it is, my fibro is out of control. Thanks again.
  4. laspis1

    laspis1 New Member

    Sorry, but what does that mean?
  5. Empower

    Empower New Member

    I have had this happen, not all the time, but every now and then, and it is very scary and hard to describe, but you described it well.

    For me it seemed to happen after I ate....it definitely wasn't a panic attack, but somewhat similar. Longer in intensity
  6. Yucca13

    Yucca13 Member

    Are the flushes you experience like waves of heat and then chills? I've had those quite severely and often lately.

    My pain doctor ordered a thyroid test and said that one of them was "off". I'm starting to wonder if I should see an endocrinologist or whatever kind of doctor is indicated for thyroid problems?

    The rush of heat and then the chills are very annoying - throwing off clothes and then putting them back on. Lately severe headaches have returned also. Do any of these things I've described sound like what happens to you?

    The weakness in the muscles sound familiar too - I am often drained of any energy and just feel like I must go to bed. Hope we can figure this out somehow.

    Best of luck to you.
    Val
  7. laspis1

    laspis1 New Member

    Thanks. It means a lot to hear I am not going crazy. Have you ever mantioned it to your doctor(s)? And If so, what did they say? Do you have any thyroid problems as well?
  8. laspis1

    laspis1 New Member

    The flushes I am describing are not hot flushes. I can be absolutely sure, because lately I have been experiencing those as well. If you have them make an appointment with your gynecologist and endocrinologist. I have not talked to an endocrinologist yet, but I will be making an appointment soon.

    At its strongest the flushes I have experienced leave me very weak, breathless, heavy. Some are mild and last just few min, but I had those that lasted a couple of hours. At least whatever was release into my body had a grip on me for that long.

    Thanks and Good luck to you.
  9. Empower

    Empower New Member

    I did mention them to the doctor and he is not sure what to think

    My heart checks out okay, had a US and EKG, BP is okay. Don't know

    I started to take Effexor XR, and the episodes seems to have subsided. (knock on wood)

    I know that my heart was really racing, and this could have been NMH, and I have heard that Effexor helps with this

    I am not sure what to think,,,,, just speculating and self-diagnosis (I know, not a good thing to do

  10. laspis1

    laspis1 New Member

    I had to look up NMH Based on the description I found It occurs when he blood flow to the brain is sharply reduced and fainting or near-fainting results. I do on occasion experience it when I am standing for a while. But the flushes still do not fit as those fainting/dizzy spells. You are right. When I was on anti depressants, the flushes were not as frequent and less severe. But they were not gone. My doctor does not seem to know what that is either. That is why I am trying to find out others, I figured It is not possible I am the only one. Thanks again.
  11. MsE

    MsE New Member

    I have been having these "flushes" too, and they certainly are not a second phase of menopause 'cause I'm almost 71! I think they are stress related. My doc said they are caused by the parasympathetic nervous system being haywire because of CFIDS. Maybe so. I try to trelax m shoulders when this happens. The more limp I go, the quicker they go.
    [This Message was Edited on 01/14/2006]
  12. laspis1

    laspis1 New Member

    I am glad to hear more of you recognizing this strange phenomenon. I promise myself to try and get to the bottom of it. Obviously that cannot be easy since most doctors admit they do not know. I agree with you, it has nothing to do with menopause, but it has been given as a possible root cause. Thanks again and God bless.
  13. laspis1

    laspis1 New Member

    My blood pressure is on the low side but I do not have a way of checking it exactly during or right after the attack, but it would be interesting to see. I do not think that it is a blood pressure causing it, but it may be part of what happens. It really feels like something is released into my bloodstream in some massive amounts, like perhaps some hormone. Sometimes these also trigger diarrhea, more so than nausea. Even though I do have nausea as well, but figured that to be part of FM. So hard to figure all this stuff out. Anyone know Dr House?

    One more thing, your friend and you should look into Erythromelalgia, a rare vascular disease. Someone gave me this website, http://www.erythromelalgia.org/
    Frankly I never heard of this before, but even though it is not what I have, the information maybe useful to someone.

    Thanks again.
  14. Sue50

    Sue50 New Member

    I go from the shivers to burning up, one of my medication summaries says that the med may interfere with body temp, I can't remember which med it is but I am assuming that is what causes the strange flushes.
  15. kjfms

    kjfms Member

    I get these strange flushes all of the time. I know for sure mine are not hot flashes-I only get those when I forget to take estrogen. I am hypo-thyroid due to Hashimoto's, have FMS as well as a pituitary tumor.

    The symptoms of these are so overlapping-I am not sure which is the cause.

    I just stop what ever I am doing and inhale very deeply through my nose and exhale through my mouth. This seem to help a little.

    I always wear layers because of this. It is bothersome. I hope you feel better soon and good luck in quest to relief.

    Thanks,

    Karen
  16. laspis1

    laspis1 New Member

    Thanks for your responses. I do want to keep this going.
    The flushes I get do not make me hot or cold. But they strong ones make me tremble. I have thyroid anti bodies, but so far have not been diagnosed with any other thyroid condition. I also have some mass/cyst of some sort on my thyroid that was biopsied, but is non malignant. (Hope I am not repeating myself, which I probably am. Do not think I have anything wrong with pituitary.

    This board is very helpful. I have just joined you and have been reading some of the old posts looking for answers to some of the questions I have. The only problem is, I cannot stay on the computer for too long as it aggravates my pain terribly. Anyway, I am glad you found you.

  17. Solaris_Starr

    Solaris_Starr New Member

    I get them as well....the only way I can describe them is; as if my life force is being sucked out or being drained out through the bottom of my feet! I then feel as weak as a kitten, and it sweeps over me like waves on a beach one after an other for sometimes min or hours. When this is happening I have to be lying down, I can't move, and even breathing is a chore. I feel empty, my heart will beat strangly as well when this is happening. I fell cold and sweaty and well as hot all at the same time????? Weird! I feel so shakey and sometimes tremble as well. I just lie there till it's over or till I feel I can get up without hitting the floor.

    I feel for you, am there myself! My docs have no idea what it is???? Or maybe they just don't give a crap! A$$wipes!

    Hugs to you
    Sandy
  18. Debr1martin

    Debr1martin New Member

    Today is my first day at this sight. Thank-God...Sometimes I feel so alone. Anyway someone talked about pain when they use computers. Computers zap my energy terribly and in general make me feel sick. It was so bad at one time I could not have a computer in my house. I'm stronger now and am able to have a laptop. Is this strange???? Same thing with cell phones. The whole side of my head hurts when I use cell phones. That is better too. I think I've gotten a lot stronger because of juicing. Right now I'm having a large cup of green juice, celery, parsley, brussel sprouts, radishes and cucumber. Oh and spinach too. I'm working again, but it's a real challenge, most days I feel like I should be on disability....but got turned down. Anyway thanks again for being there I was at the end of my rope lately!
  19. Kacjac

    Kacjac New Member

    Thank goodness these episodes have been gone a long time, but I used to have them about 5 years ago.
    No Dr. ever knew what they were, one time I got so scared, I went to the ER. they chalked it up to panic or anxiety attacks, but yet when the bad one struck, I was calmly sitting down to a meal with my family. I felt like I was on fire, the flush was so bad. Since the Dr.s didn't know,
    I tried to live with them, I would feel weak, and get tired, take a xanax, and go to sleep, when I woke up I'd be fine!
    They went as quickly as they mysteriously came, I had about five of them.
    It was like an adrenal rush, or maybe thyroid related.
    I dunno, I've had several weird, mysterious, things happen to me, over the years that were never explained.
    I'm a living, breathing medical mystery...LOL
    I hope they end for you, because they are absolutely no fun, at all!
    I empathize with you completely, take care~ Karen
    [This Message was Edited on 01/15/2006]
  20. laspis1

    laspis1 New Member

    Thanks Sandy and Karen, you have described it well, it is like life is being sucked out of you. I am certainly glad to see more postings here. Unfortunately no doctor has been able to give me an explanation. But the answer must be out there. In just two days, we found that a number of us are familiar with this so I just have to keep on digging. Unfortunately for me the episodes are much more frequent. I can have few a day. Those are usually mild. If I were to use an earthquake scale I may get 5 quakes that rate one. But in the last 3 yr I must have had 20 that rated 9. With those I really did think I was going to die. Luckily, I can go for months without them, but right now I have been experiencing it since November and it does not want to go away, and it makes me feel sicker and weaker every time.
    Please keep reading and if you recognize it, chime in. I would also be curious about your thyroid. Maybe it is thyroid related. Anyway, thanks again.