Aa
New to forum not Fibro/CFS
Hi,
I'm Dawn. I was diagnosed 16 years ago at age 40, originally with CFS then changed to Fibromyaligia after ruling out Lupus because originally I had a positive ANA & DS-DNA, but have been negative since. My original symptoms were primarily severe fatigue after moderate activity, and then exacerbation of pre-existing neck pain followed by the whole gammet of symptoms mental and physical that you read about. I had a rash, bilateral migrating joint pain, cystitis, vomitting, sensitivity to heat, white & red spots on my tongue, and an inability it stay awake. I went through all the available tests at the time, like EBV, and mine was reactivated, although now that doesn't seem significant from what I've read. I was treated with DHEA and vitamins and minerals, plus accupuncture and other physical therapies. Nothing really did much good, except time. The good news is that after suffering for about 5 years, all of my symptoms starting lessoning to the point that I almost forgot I was ill. Then about 6 months ago they started coming back. I am under a lot a stress, but I have been long before 6 months ago, so that doesn't make much sense. Currently I am on Cymbalta & Gabapentin & Oxycontin & Norco for severe neck and lower back pain which are both substantiatied by MRI and herniated disc problems, stenosis & spurs. The pain started before the other symptoms recurred, and got to the point I was having a hard time working, so I started seeing a pain management doc. I did OK for about a year, but now I have once again developed somnolence and fatigue to the point I can hardly work, and I'm once again waking up morning after morning with overall pain, numbness, and inability to wake up; also sometimes respiratory symptoms and nausea/vomitting. Most importantly, I'm once again experiencing severe memory loss & "brain fog" (like before), not to mention mood (anxiety/irritibility) and personality changes. My big question is whether my new (or renewed) symptoms are due to the fibromyalgia or the drugs I'm on or something else. I was surprised to read that the Cymbalta may be the cause of some of the problems I'm experiencing. One of my new symptoms has been excessive hot "flashes" & sweating. This time, being post menopausal, I have had lots of hormonal tests run at my insistence and many of them are abnormal. For instance cortisol is high & ACTH low. TSH & FT3/FT4 are all low. Female hormones show total estrogen, LH & FSH all elevated for a post menopausal woman. When I search the Internet, I'm seeing that there are many links between hormones and fibromyalgia as well as vitamin D and fibromyalgia. My vitamin D level is also low (17) , although I can't imagine why since I'm a dairy lover and get outside as much as I can. Just wondering if others have similar problems and questions? I can't seem to find a doctor now that understands any of this. My primary doc sent me to a rheumatogolgist who only bragged of his knowledge and told me to get off the narcotics as if I prescribed them myself, and a shrink who prescribed a big gun mood stabilizier with death as a side effect, which I'm sure I do not want. I can't believe after all these years this is as far as we've gone. Help anyone???????
I'm Dawn. I was diagnosed 16 years ago at age 40, originally with CFS then changed to Fibromyaligia after ruling out Lupus because originally I had a positive ANA & DS-DNA, but have been negative since. My original symptoms were primarily severe fatigue after moderate activity, and then exacerbation of pre-existing neck pain followed by the whole gammet of symptoms mental and physical that you read about. I had a rash, bilateral migrating joint pain, cystitis, vomitting, sensitivity to heat, white & red spots on my tongue, and an inability it stay awake. I went through all the available tests at the time, like EBV, and mine was reactivated, although now that doesn't seem significant from what I've read. I was treated with DHEA and vitamins and minerals, plus accupuncture and other physical therapies. Nothing really did much good, except time. The good news is that after suffering for about 5 years, all of my symptoms starting lessoning to the point that I almost forgot I was ill. Then about 6 months ago they started coming back. I am under a lot a stress, but I have been long before 6 months ago, so that doesn't make much sense. Currently I am on Cymbalta & Gabapentin & Oxycontin & Norco for severe neck and lower back pain which are both substantiatied by MRI and herniated disc problems, stenosis & spurs. The pain started before the other symptoms recurred, and got to the point I was having a hard time working, so I started seeing a pain management doc. I did OK for about a year, but now I have once again developed somnolence and fatigue to the point I can hardly work, and I'm once again waking up morning after morning with overall pain, numbness, and inability to wake up; also sometimes respiratory symptoms and nausea/vomitting. Most importantly, I'm once again experiencing severe memory loss & "brain fog" (like before), not to mention mood (anxiety/irritibility) and personality changes. My big question is whether my new (or renewed) symptoms are due to the fibromyalgia or the drugs I'm on or something else. I was surprised to read that the Cymbalta may be the cause of some of the problems I'm experiencing. One of my new symptoms has been excessive hot "flashes" & sweating. This time, being post menopausal, I have had lots of hormonal tests run at my insistence and many of them are abnormal. For instance cortisol is high & ACTH low. TSH & FT3/FT4 are all low. Female hormones show total estrogen, LH & FSH all elevated for a post menopausal woman. When I search the Internet, I'm seeing that there are many links between hormones and fibromyalgia as well as vitamin D and fibromyalgia. My vitamin D level is also low (17) , although I can't imagine why since I'm a dairy lover and get outside as much as I can. Just wondering if others have similar problems and questions? I can't seem to find a doctor now that understands any of this. My primary doc sent me to a rheumatogolgist who only bragged of his knowledge and told me to get off the narcotics as if I prescribed them myself, and a shrink who prescribed a big gun mood stabilizier with death as a side effect, which I'm sure I do not want. I can't believe after all these years this is as far as we've gone. Help anyone???????
BTW, I also have severe neck pain and back pain as well. I'm not sure if it goes with the territory, but I've had to take narcotics to relieve that and the migraines I've also been getting (isn't getting older fun?).
I can't add much to your post, except to say that I can so very much sympathize with you. I'm 50 and going thru menopause, and have also had hyperthyroidism and still have some existing nodules, as well as having fibromyalgia and arthritis. I cannot begin to tell you of my frustration with doctors and the medications they prescribe. I can no longer work, and experience excessive hot flashes and night sweats like you. What I can tell you is that I would much rather try to deal with my pain than take some of those medications and possibly have a severe side-effect to deal with. I see a new rheumy in June, and I'm really hoping and praying that he's at least patient and knowledgeable about this. Good luck to you; I hope someone else will be able to help a little more.
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