URGENT Warmer weather and fatigue is this CFS also

Discussion in 'Fibromyalgia Main Forum' started by jakeg, Apr 25, 2006.

  1. jakeg

    jakeg New Member

    I was DX last year with FMS in June. I had severe muscle pain and fatigue to the point that I felt like a rag doll from be exhausted besides the pain.

    During the winter months the fatigue seemed to disappear but the pain remained.

    Now that it is getting warmer again the fatigue is back with a vengeance. I tried to do a couple of things in the yard and after 5 minutes was totally exhausted and the pain has hit that perfect 10 once again.

    Does this sound as though I may have CFS on top of FMS? It's bad enough that I have to live with this pain from FMS, always at or near 9 on the pain scale. I hate feeling like a rag doll unable to do anything for fear of collapsing and not be able to get back up and possibly end up waiting for some one to come looking for me.

    If you think so are there any types of tests or anything that my doc can do to help.

    Jake
  2. jakeg

    jakeg New Member

    Just to get to the top
  3. lenasvn

    lenasvn New Member

    I get so weak when it warms up just a little that it feels like I'm going to collapse. After walking a couple of blocks my legs turn into led.

    Pushing this way when the body doesn't respond normally would surely trigger a flair, and pain. it does for me. It sucks, doesn't it?!

    My mom is diagnosed with FM, but get fatigued like this too. It looks like CFS, but she didn't get that diagnosis. I am not sure if she has it, and I don't think she bothers, she is old and retired now.

    It is baffeling, I am asking myself the very same question.


    [This Message was Edited on 04/25/2006]
  4. borntired

    borntired New Member

    I find that warm weather that has high humidity keeps the aches and pain. I am originally from Massachusetts and the Winter really did a number on my aches and bones. The heat is tough if you are in air conditioning that seems to help.
    I wish there was a rhyme or reason to the DD.
  5. jole

    jole Member

    For some reason, I find my life just the opposite. I really do feel better in the warmer weather and higher humidity. The cold causes my fatigue and pain to escalate terribly. I still flare in warm weather, but it doesn't last as long for some reason.

    Maybe part of this for me is because I'm always so terribly cold that I find myself tensing up, and in the summertime I don't do that. But the fatigue just seems to come and go in cycles, just not as severe in the summer.

    Friends - Jole
  6. sues1

    sues1 New Member

    I live for some hot days..even the humid ones.....only releive I get. Not perfect, but better. I can do more then.

    Cold just shuts me down and I hurt so bad. Air conditioning is very hard on me, no fans on me either, that is pure torture.

    But it seems that we, with this illness, either loves heat or cold, and can hardly bare the other. I do not know why.
    Blessings...Susan
  7. cookstove

    cookstove New Member

    Sorry but I am the opposite too Jake. I look forward to summer and the warmth. I do believe the higher humidity is part of the reason that the pain is better. I still have pain, but probably at a 5 level. I can still overdue with any activity or stressful event and go into a flair, but they do not last as long.

    We have had an unusually cold winter in the Central Oregon Desert this year and my pain level has been at a 10+ level. I only get just a slight relief with a very warm house, and then my husband goes around in shorts wiping the sweat from his brow.

    Several years ago I spent two weeks in Death Valley during the winter. It was the most pain free time I have ever had. I could sleep like a log all night. I was too new at trying to track down the reasons, so I always thought it had more to do with barometric pressure, which is influanced by being below sea level. But maybe it was the humidity instead.

    I believe our reactions and symptons are so diverse for the same illnesses. No wonder doctors have so much trouble treating us, they always like to believe that we all follow classic symptoms.

    Be careful to not overdue. That must be so frustrating for you. It is for all of us, as one time we do an activity and are fine and the next time we repeat the same activity and fall apart.
  8. MtnDews

    MtnDews New Member

    Jake,
    Ask your doctor if they have ruled out Myasthenia Gravis.
    H
  9. Adl123

    Adl123 New Member

    Dear Jake,
    I'm sorry you are having such a bad time.
    Usually CFS seems to join Fibro, somewhere along the way, except for people who start out with CFS, and then Fibro comes into the picture. They seem to go together after a while.

    It may not be that the weather is causing the fatigue, it could be that, because of the sun and warmer weather, you art actually trying to do more, and are finding that you can't. Check to seee if your schedule is exactly as it was in the winter. You might just be trying to do too much.

    On the other hand, if you aren't, maybe the heat is affecting you. Everyone is different. Only time will tell.

    Good luck.
    Terry
  10. jakeg

    jakeg New Member

    I just got back from my house in the mountains. The temp up there was mid 60s. I felt really good while I was there except for the 2 hr drive to get there. The remainder of that day was pretty bad.

    Thursday was good though and didn't feel like I did the other day when I posted this.

    I'll have to talk to my doc about and see what she has to say. She is not one of the docs that were involved with the original DX maybe she will have some thoughts on this.

    Thanks Again

    Jake
  11. bookworm18

    bookworm18 New Member

    Hello. I know that there is a symptom many people have- but i cant remember the name. but it is difficulty with weather changes. I do worse in winter then summer and get better always in summer. I dont know if its in fm too, but I wouldnt dought it. I would ask your doctor,maybe B12 shots. I would check out the book " From fatigued to fantastic" it talks about it in there. Hope that helps. Wish you well- kim
  12. jarjar

    jarjar New Member

    Jake you might want to look into the marshall protocol. It's too much to go into details but I find if I avoid sun contact I feel so much better. I don't go out without longsleeve shirt and wide brim hats.

    Sunshine just wipes me out with fatigue. It wasn't until I tried the Marshall Protocol that I realized how much sunshine was making me more fatigued.

    Worth looking into.

    Best of health

    Jay
  13. zenouchy

    zenouchy Member

    Certain meds can make you more heat intolerant too. If you look up a specific med at mayoclinic.com for example, it will provide you with all of the side effects. One of the meds I take adds to my heat intolerance. (Wish I could change meds, but I can't!)

    P.S. Living in TX, I REALLY know heat. It used to not bother me so much. I prefer cooler weather, but don't get it often enough here in Austin. We had 3 weeks of 108 degrees last year!

    Good luck!

    Erika
  14. Rene

    Rene New Member

    I'm with you Jake. I am like a snowman that melts in like anything over 75 and I'm in CA. I have no energy in the heat.

    Do you have POTS or Neurally mediated hypotension? I do. Have you had a tilt table or poor mans tilt table test?
    Rene
  15. wuki1

    wuki1 New Member

    I go through about 2-4 weeks of increased symptoms in the spring and fall. I assume it is the weather changes as I live in South Dakota.
  16. UnicornK

    UnicornK New Member

    I have severe heat intolerance. A couple of years ago hubby and I went to Kings Dominion. It was in June and the temp was almost 90. I didn't want to ruin it for hubby so I endured a migraine for almost 6 hours. I finally couldn't take it any longer and had to go to the first aid station. I was so bad that the nurse there had hubby drive onto the park grounds because I couldn't even walk.

    I still can't believe I did that...that I was ABLE to endure for that long! WOW

    Now I still get sick if I get too heated.

    God Bless.
  17. jakeg

    jakeg New Member

    I've been tracking my temp along with BP for my doc and my temp is almost always 97.6 or lower. A few days in a row it actually was running at 95.0 to 95.5 and I felt like all of my muscles were locking and couldn't move them easily, but did not feel fatigued at all sure alot of pain but no fatigue.

    Like I said I was at my cabin for a couple of days and the temps were mid 60s and no fatigue but normal pain level of 9 and I do pace myself because I know overdoing will basically make me housebound for days.

    I'm thinking about asking my doc for a referral to an infectious disease specialist to see if there maybe underling causes to this, as that is the one type of doc I haven't been referred to yet.

    So far I have been seen by a neurologist, rheumy, physiologist(to rule out depression as my first quack of a doc kept telling the insurance co and telling me different) and general practitioner. Are there others that maybe I should see besides the infectious disease specialist.

    Jake
  18. jakeg

    jakeg New Member

    Yes I was checked for the points and have 14 out of the 18. Also the neurologist that I went to said that I have multiple myofacial points on my spine and a couple of places on both arms.

    I also have fluctuating bowl problems from constipation to diarrhea, multiple stiffness in the morning(back,knees,legs,arms and neck) it usually takes about an hour or 2 before that eases and can start moving relatively easy without a ton of pain.

    Typically I'm not to bad for the first couple of hrs of the day and then the pain level gets worse ending up at a 9 or 10.

    When I was growing up I was always told that I had a very high pain tolerance by many doctors and emergency room personnel. I was not the most graceful guy growing up. When I was 6 yrs old I was the tallest in my class at 5'9".

    I remember being taken to the emergency room when I was 9 with a severe star shaped laceration in the middle of my forehead and didn't feel a thing. I new I was bleeding but didn't feel any pain. I also was burned with hot tar at the age of 19 at work that covered my entire chest and felt little pain until they started peeling it off at the hospital and told them to stop and use kerosene to take it off instead as that is what I used to take over half of it off.

    Now the slightest thing sets me off in pain that just never stops, the pain meds that I take just take the edge off and they are oxycontin 10mg twice a day and vicodin 5/500 4 times a day.

    Jake
  19. jakeg

    jakeg New Member

    I've checked a couple of websites for the things that you have mentioned and some of the symptoms do match for both of them but most of the symptoms do not.

    I just don't get this DD. How can I go from cold and hardly any fatigue to warm and practically be immobilized with fatigue from change in temp???

    My main problem seems to be from the waist up, back,shoulders, arms and neck being the most affected without including temp changes. When I do over do things though it affects my entire body and the little pain devil in me is screaming its loudest to let me know, at that point temp doesn't seem to play a roll.

    While I can handle the pain to some extent the fatigue just takes every thing away and leaves me with nothing. This is a major problem for me and I'm going to have to find away to handle this and I don't know how I will find my way though this part of this DD.

    I used to be a type A personality always on the go and now can hardly negotiate the day which is very frustrating for me.

    This is part of how this started but at that time the pain was more prevalent then the fatigue. I've grown to except the pain and believe that it is something that I'll have to live with but the fatigue is something different. How can I pace myself for something that just slaps you in the face and leaves you unable or very close to unable to move????


    Jake
  20. jakeg

    jakeg New Member

    You haven't let me down. You've pointed things out for me that I wouldn't have thought of.

    Thank you so much for trying. It's always good to have someone to point things out when your trying to figure something out and are overlooking things because you've missed them.

    Like in a puzzle if you overlook one peice becuase it looks as if it wasn't a part of the puzzle so you got rid of it only to find out its the last peice and now you no longer have it.

    Jake