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MsSonnie Posts: 21
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Hello there, I'm going to make a long story short.....I have had pain and fatigue and fogginess in my brain since last October. I've had the fatigue longer but never paid much attention until now. There are days when I just can't move because of the pain and fatigue. One of my sisters has Fibro and told me that my symptoms were similar to hers. My GP told me my aches and pains were a result of my age (I'm 44 btw), lack of sleep, genes, etc.  Needless to say I switched doctors. Fast forward to May when I found my current doctor who is an Internist. She happens to know about Fibro and has been testing me to rule out other things. (She knew exactly where to push on my sore spots.  ) My RA and Lupus tests were negative. She's fairly confident that I have Fibro though. I also get Cluster Headaches. I don't get Migraines but CH's are horrid. Does anyone else here get them? I have a follow up test in a few weeks and more tests. I hope a diagnosis comes soon so I can get treated. This week has been a bad one for me. I had a bad flare up and haven't been to work much at all. I'm also glad I found this site full of supportive people who know how I feel. Take care and see you around. |
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MissStacey Posts: 14847
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Welcome! I was told by my Neuros that my recurring migraines seemed like cluster headaches. I told him if I had a gun I would probably use it they said they are also known to people as "suicide headaches" I've never truly been suicidal but they are terrible either way I am treated with Topamax daily for a preventative med and also they explained Lithium helps as well which has stabilized my Bipolar so it's a plus on both. I have not gotten them like that in years now they are horrifying migraines creeping through lately. Do you take anything to prevent yours? I hope you like it here, it's super supportive. You'll get along just great!  I suffer from Rapid Progressive MS, Lupus, Fibromyalgia, Epilepsy, Migraines, Neuropathy, IBS, Narcolepsy, Arrythmia, Arthritis and too much more complete list on profile.
"Just because we have the right to disagree with a person, does NOT give us the right to disrespect that person."
I'm not currently active due to many personal and medical issues. I will not be participating in MDJ for awhile, my thoughts and prayers are with everyone. I hope everyone is well and I appreciate all of the thoughts, kind words and messages. I have tried to respond as much as possible and apologize if I have not gotten back to everyone. Love & Hugs, Stacey |
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Tabi Posts: 180
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Hi Ms Sonnie, We're glad you found us too It can be a very long road to a diagnosis. I too have been pushing doctors since last October and yes my doctor also did a ton of tests because a positive for Fibro usually means a negative for everything else. Until you do start receiving treatment (which in itself can be a journey) keep in mind to listen to your body. If it says rest... rest, if it says take a nice long hot soak in the tub do that too  You have a lot of support behind you now and I'm sure the others will be along soon enough to offer their advise as well. Brightest Blessings, Tabi Every experience, no matter how bad it seems, holds within it a blessing of some kind. The goal is to find it. - Buddha
I am living with fibromyalgia and chronic fatigue but have yet to give up the battle! |
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MsSonnie Posts: 21
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Thank you so much for your replies. I like it here already. I'll take any advice you want to pass along. I am finding out that warm water does wonders. I've been a bath person but there's no time like the present. It took my sister years to get a diagnosis. I'd hate to have to wait that long. But you're right Tabi, to rule everything else out will give me a proper diagnosis. Another bad thing for me is that my managers are only supportive to a point. I don't know what to do about that yet. I work full time and that's rough at times. As for the cluster headaches - ouch, they're brutal. The only way I can describe it like a hot knife sticking in your eye. I've never wanted to commit suicide though. I take Topamax for them and a high dose of magnesium. Unfortunately it doesn't stop them entirely. I've tried Imitrex and the like but I'm allergic to a lot of those meds. I've heard Lithium was effective. I'm in search of a new neuro so maybe he/she will try a different treatment. |
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hatbox121 Posts: 10502
Group Leader
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Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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MissStacey Posts: 14847
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Me either lol it's just their nickname because they are very brutal. Migraines are severely brutal too! If you had the tests for RA, Lupus and Lyme done then it sounds like you are done. It's just one time they get you for all 3 and some extras like vit d levels etc. Those are the exclusion tests, then they can comfortably confirm Fibro. It's good to have your Thyroid levels checked too if they haven't already. I suffer from Rapid Progressive MS, Lupus, Fibromyalgia, Epilepsy, Migraines, Neuropathy, IBS, Narcolepsy, Arrythmia, Arthritis and too much more complete list on profile.
"Just because we have the right to disagree with a person, does NOT give us the right to disrespect that person."
I'm not currently active due to many personal and medical issues. I will not be participating in MDJ for awhile, my thoughts and prayers are with everyone. I hope everyone is well and I appreciate all of the thoughts, kind words and messages. I have tried to respond as much as possible and apologize if I have not gotten back to everyone. Love & Hugs, Stacey |
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hatbox121 Posts: 10502
Group Leader
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I thought I was putting this on a thread I was already posting on......wonder how I got over on this one?! Post edited by: hatbox121, at: 07/29/2010 07:32 PM Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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jenigood1 Posts: 3313
Senior Member
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Jeni
Lamictal
Abilify
Cymbalta
Trazodone
Vyvanse
"Remember - when you fall on your face, you're still moving forward!"
My advice is free, completely anecdotal, and comes from my own experience. Always talk to your doctor before you change anything. |
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raynedae Posts: 8219
VIP Member
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Hi Ms Sonnie and welcome to the group! Cluster headaches are supposed to be the worst of all, but I wonder if they just say that because men are more prone to them than women? J/K... I haven't had them, I just get garden variety migraines when my neck tenses up or there's a sudden change in the barometer. My sister had cluster headaches for a couple of months and spent much of that in the ER, trying to get relief. Her husband had to pull a gun out of her hand once. But she was lucky, they disappeared as suddenly as they arrived. I'm fairly certain she had fibro too. Don't you just hate it when they blame everything on your stage in life? From about 40 to my diagnosis, everything was blamed on perimenopause. Headaches, perimenopause. Infected fingernail? Perimenopause...so annoying!! Then I wrote a short but very descriptive email to my PCP and ended it, "I'm too young to feel this old!" and she dx'd me via email. But one thing is certain, stress can cause headaches--I was still getting a couple of migraines a week even on Topomax and then I decided to leave my now ex husband. Immediately my headaches dropped to about one a month and I was able to quit taking Topamax. Does your company have enough employees for you to request intermittent FMLA? I think it's 50 in one location and you have to have been employed for a certain amount of time...here is the government website where you can figure out if you're eligible or not: http://www.dol.gov/whd/fmla/index.htm If you can get this, they can't fire you for absenteeism as long as you don't exceed the 120 days (at least I think it's 120 days)...it's awfully late and I'm sure I'm not making the least amount of sense... Welcome! Newbie hugs, rayn
I am not a medical professional so please exercise common sense when it comes to my advice.
I am also NOT a lawyer so exercise common sense when it comes to my advice.
I was a bookseller so you can trust my advice regarding books :)
www.operationbeautiful.com |
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PCG Posts: 2259
Senior Member
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Welcome to the forums, hope you get diagnosed soon! Big welcome hug! Very funny Scotty, now beam down my clothes!
http://pcgaijin.deviantart.com/
I'm not a doctor, what I say comes from personal experience only. |
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