Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Sue, I wish I could really describe them. They started out like complete fatigue and I would pass out for days. That is gone. Now I get where I almost feel like there is no oxygen in my head like I am being strangled, I start to feel a lot of pain, any movement or noise is painful, and I just have to go to bed and wait it out for days until it passes. I don't sleep, it is just like lying there feeling like death. Then I can barely walk for weeks, I can't speak right, it is so scary. Then I start to recover and after a few months I notice I can go out and walk around at a normal level. I can still barely hold my head up for long. I have a ton of " tender " spots I have found on my neck and shoulders, but are more like severely painful spots! I do not stay in bed much anymore, I have been able to get up. But I am very careful about my activity. Seems sort of extreme for fibromyalgia. Does that sound at all familiar? I am so frustrated by not knowing what it is. And the doctors have all said they have never heard anything like it. My MRI is tomorrow, it was sch for today and they messed up. The neuro said it sounds like MS attacks, but even he said he is not sure. And I am really not describing what I have read about MS. I also have an appt with the environmental medicine center next week which is very pricey, but they say they treat women with implant illness, so I will let you all know what they say. My husband is driving me crazy trying to get me to go to the mayo clinic to try to get someone to figure it out. Several doctors said fibro, several said it is not. I totally went off the diet and back on sugar so I could gain some weight. I feel like crap, but don't even have the energy to go out and get fresh food. And I did finally gain some weight back. I forgot the rashes! I have had outbreak after outbreak, all over my neck and jawline, the neuro said he has no idea what it is. Another trip to another doctor is just too much. I am going to PT twice a week, and all the other stuff, it is just ridiculous. On the better side, I have been able to walk a lot more, stretch a bit, have more mental clarity, and the best is not having to stay in bed for days. I had a slight attack a few days ago but caught it in time so I was able to minimize it. ANY body have any attacks like this? And Sue, yes mine at one point were like panic attacks with bad heart beating and such, but most of the doctors said it is not anxiety or panic (and I just had very bad anxiety at my last MRI and it is nothing like what these attacks are so I am pretty confident it is not that). Sorry so long! Love Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Sue, I wish I could really describe them. They started out like complete fatigue and I would pass out for days. That is gone. Now I get where I almost feel like there is no oxygen in my head like I am being strangled, I start to feel a lot of pain, any movement or noise is painful, and I just have to go to bed and wait it out for days until it passes. I don't sleep, it is just like lying there feeling like death. Then I can barely walk for weeks, I can't speak right, it is so scary. Then I start to recover and after a few months I notice I can go out and walk around at a normal level. I can still barely hold my head up for long. I have a ton of " tender " spots I have found on my neck and shoulders, but are more like severely painful spots! I do not stay in bed much anymore, I have been able to get up. But I am very careful about my activity. Seems sort of extreme for fibromyalgia. Does that sound at all familiar? I am so frustrated by not knowing what it is. And the doctors have all said they have never heard anything like it. My MRI is tomorrow, it was sch for today and they messed up. The neuro said it sounds like MS attacks, but even he said he is not sure. And I am really not describing what I have read about MS. I also have an appt with the environmental medicine center next week which is very pricey, but they say they treat women with implant illness, so I will let you all know what they say. My husband is driving me crazy trying to get me to go to the mayo clinic to try to get someone to figure it out. Several doctors said fibro, several said it is not. I totally went off the diet and back on sugar so I could gain some weight. I feel like crap, but don't even have the energy to go out and get fresh food. And I did finally gain some weight back. I forgot the rashes! I have had outbreak after outbreak, all over my neck and jawline, the neuro said he has no idea what it is. Another trip to another doctor is just too much. I am going to PT twice a week, and all the other stuff, it is just ridiculous. On the better side, I have been able to walk a lot more, stretch a bit, have more mental clarity, and the best is not having to stay in bed for days. I had a slight attack a few days ago but caught it in time so I was able to minimize it. ANY body have any attacks like this? And Sue, yes mine at one point were like panic attacks with bad heart beating and such, but most of the doctors said it is not anxiety or panic (and I just had very bad anxiety at my last MRI and it is nothing like what these attacks are so I am pretty confident it is not that). Sorry so long! Love Nan Quote Link to comment Share on other sites More sharing options...
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