Bouts of bone-crushing weakness then elevated pain->

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by DeborahLynn, Apr 23, 2012.

  1. DeborahLynn

    DeborahLynn Member

    I just wondered if any of you could relate: very often, I will have bouts of such intense weakness that I can hardly walk. It will be that way for a couple of days. Then comes a spike in almost unbearable pain levels for a few days.

    I have what I call regular "crash /flares " (crash referring to CFS symptom increase, and flares referring to FMS symptom increase, which are not "regular" at all, really...). But the intense crash/flares are so severe, I need a different name to refer to them!

    Do you have a name to describe them? (Besides H-E-double hockey sticks, I mean...lol)

    I'm smack-dab in the middle of one right now, and am looking for ways to find humor and the bright side of things. It always helps to focus on hope than to focus on the pain/weakness, etc; Yahweh is my Helper!

    I look forward to hearing from you! Have a blessed day, in spite of your symptoms!

    Debbie



  2. mbofov

    mbofov Member

    I don't have FM, have never had to deal with pain, but know all about weakness and bone-crushing fatigue and so on.

    Your intense weakness sounds very similar to when my adrenals were wiped many years ago. I was weak as a kitten and it took my chiropractor who did muscle testing to find out what was wrong - it was my adrenals and he gave me Drenatrophin PMG by Standard Process which was a godsend. It's an adrenal glandular product. This was before I knew anything about the adrenals and now I know a lot more. Have you ever had the adrenal stress index test? It will measure cortisol levels, and so on. But that chiro was priceless. I would have been lost without him - regular docs did not have a clue. My adrenals now are in pretty good shape but I have to be very careful with stress - I have a low tolerance for it. A good B complex and extra pantothenic acid are also very important for the adrenals.

    And then of course there is the bone-crushing fatigue which happens after I over do things, which I call crashing, which lasts for 2 days (it used to last for 3 days), but it was different than the adrenal fatigue. There are so many different kinds of fatigue!

    Have you ever seen an integrative medicine doctor? They try to combine the best of both traditional and alternative medicine and are much more knowledgable about things like adrenals and nutrition, etc. than regular docs.

    I hope someone who has experience with FM pain can help you out with that.

    Hope is important, but what gives me hope is learning and hopefully making progress.

    Take care -

    Mary
  3. azmiranda

    azmiranda Member

    It was like you were typing a message that came off my keyboard Debbie this is exactly what I am going through right now. I have had pain/fibro/arthritis since childhood and I have never gone through what I am going through currently. I am in the severe pain stage right now. I have never felt pain such as this before...and this is even though I have taken 100 mg of Tramadol today x three!
    I hope and pray we get some relief soon....

    Hugs,
    KB
  4. DeborahLynn

    DeborahLynn Member

    Thanks for replying! I did have some tests done by an endocrinologist, and even was able to see a neuro-endocrinologist in NYC. I'm pretty sure I had the adrenal stress test done, although I don't think that's what they called it... He injected me with I believe it was cortisol, and then took my blood every so many minutes to see how my body reacted. He did all of the routine tests, and the neuro-endocrinologist did even more specialized tests, but as usual, everything was within normal ranges.

    I have a family practitioner, but I usually try natural remedies coupled with prayer before I go to a doctor. In my experience, natural remedies are so much more beneficial than drugs...

    Thanks for your kind suggestions, though! I appreciate your reply!

    Blessings,

    Debbie
  5. DeborahLynn

    DeborahLynn Member

    Thank you for your reply! My crash/flare is easing off ever so slightly; I spent a little less time in bed today. I pray you're feeling some better by now, too.

    Yesterday late afternoon, I was able to take a fever bath treatment, and I think it helped. I know it relieved a great deal of the pain for a couple of hours.

    I used to be on Oxycodone and Ocycontin for pain (for two years), but over time, I found out that I actually felt more pain after the meds wore off, and the meds were effective for shorter and shorter periods of time as my body built up a tolerance for them. When the pain meds wore off, I had to wait a couple of hours before I could take the next dose. Those couple of hours were excruciating.

    Our heavenly Father has been so merciful to me; He provided a way for me to be able to learn natural remedies at that time, and I find that they, coupled with prayer, are more effective than the pain meds I was on. I'll be happy to tell you my experience some time, if you're interested.

    I guess I'd better get to bed now; prayers for your relief!

    Debbie
  6. Mikie

    Mikie Moderator

    That you suffer these crashes. I also had them early on in my illness after it was triggered full blown. I also have CFIDS/ME and FMS. I hope you can find a doc to help you.

    Love, Mikie
  7. DeborahLynn

    DeborahLynn Member

    Thank you! You mentioned that you had these crash/flares early on; did that change for you? Does a treatment work for you? I have a family practitioner who is very understanding, but seems like he's learning along with me about CFS/ME. He referred me to a rheumatologist for the FMS...

    I wish I could afford to see a doctor at Wildwood Hospital in GA, or go back to Uchee Pines in Seale, AL (insurance won't cover those doctors, and they're the doctors that have really helped me the most!).

    Blessings,

    Debbie
  8. DeborahLynn

    DeborahLynn Member

    I appreciate your kind words; what an encouragement! I pray you have a pain-manageable day, or better yet, a pain FREE day!

    Debbie
  9. gb66

    gb66 Active Member

    Debbie, I haven't seen you on the board in a while and I've been wondering how you're doing. I hope you are feeling better and having less pain these days. Please post or email me if you feel up to it. Thinking of you and praying for you. GB66
  10. DeborahLynn

    DeborahLynn Member

    Thank you for your prayers; so good to hear from you! I'm so sorry I haven't written in so long... I keep forgetting that I have another e-mail account, and I don't check it near enough (in fact, I'll have to find the password for it again, lol!).

    I have been having a rough time of it lately, but our Father in heaven sustains me, and gives me joy in life! The flu was going around in my family, and I caught it, too. I think I'm mostly over it now... I hope!

    Has your household escaped the flu so far? I pray so. It's brutal this year, it seems.

    Thank you for contacting me; I will check my yahoo e-mail account soon (I'm not at home atm.) You'll be in my thoughts and prayers!

    Debbie

  11. gb66

    gb66 Active Member

    It's good to hear from you. I'm sorry you and your family have had the flu. My husband gets the flu shot every year, I'm afraid to try it though.

    So far I've escaped it. I don't go out much but I know I could possibly pick it up at doctor's offices. So far so good.

    Are you still going to Dr. O? I'm still going over there and seeing Sue G. Not real happy with her but since O. doesn't take BC medicare supplement insurance I can't see him. I really don't know any of the other docs there.

    E-mail me sometime if you want. I'm always here. lol GB66
  12. greatgran

    greatgran Member

    Had this so often in the beginning then seemed to ease up but since Thanksgiving I have it all to return.. I simply feel horrible .. I was dx with CFS/FM and about 4 yrs ago Chronic lyme disease.. Tried treatments but they never last.. don't ment to discourage you because I feel it it wasn't for the Lyme I wouldn't have gotten to this point..

    I just posted on de we ever get well ...maybe there will be some answers for you..

    Sure can relate... sorry anyone has to go through this...
  13. DeborahLynn

    DeborahLynn Member

    I'm so glad you haven't gotten the flu! My husband got the flu vaccine, and so far so good for him, but those of us with CFS/FMS tend to react badly to flu immunizations, from what I've heard...

    I haven't been to Dr. O in two or three months, although I know I need to go... don't have extra $$ for the co-pay... But I will be going soon. So sorry you're not happy with Sue G.; I haven't met her yet. I am acquainted with Dr. Winters a little bit in that practice... Some people love him, and others not so much... I guess it's that way with all Dr.'s.

    I do want to e-mail you soon; I got up late this morning due to feeling very weak and ill (CFS/FMS), but was able to get breakfast and do a couple of small chores, but then I had to lay down for 3 hours. Then I had to try to go to the store (I'm so thankful for the scooters they provide; I wouldn't be able to go to the store if they didn't...). Now I'm ready to "crash" again. You know how it goes. I will e-mail you hopefully tomorrow. I enjoy our "talks" through e-mail!

    I pray you have a blessed rest tonight!

    Debbie
  14. DeborahLynn

    DeborahLynn Member

    So sorry it all returned; I pray you get reprieve soon! I've often wondered if I might have Chronic Lyme's, but haven't been able to afford the "real" test for Lyme's. A very good doctor told me once that even if I was diagnosed with Lyme's, she would still use the same treatments that she had already diagnosed for me, i.e. the eight laws of health...

    So the treatments you're speaking of for Lyme's never lasted, either? I have always wondered about that. I will look for your post you referred to above.

    I so agree with your last sentence! Prayers for you, and all on this board, that we find relief, and soon!

    Debbie