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Hi! I've had textbook CFS for many years, had been gradually improving over time from a more severe case to a moderate case.
From Fall 2007 to Spring 2009, my family underwent an ongoing crisis involving the fatal illness and death of another family member. There was a lot of physical work to do, which I did gladly until last winter when I started to feel strain. There was also a lot of emotional stress from both coping with the illness and dealing with caretaking issues. In January I got a cold, which happens a couple of times a year, no big deal. Well, as soon as I got over that, I got another one, and then bronchitis, and then another bug, then a sinus infection etc. until finally in June I got a full on three week flu-like hell virus.
Finally at the end of July my health gave in. The family member had passed away, the physical exertion was over, the stress had subsided, a couple months passed but my health just vanished. At first it felt like a relapse but then every week or so it would get worse, until late August when I had a strange, near passing out episode that scared the sh&t out of me. I lost my appetite, lost 5 pounds in a week and a half, had severe bowel changes, fevers, and got this horrible, unrelenting weakness. I became bedridden and started sleeping most of the day. These were new symptoms to me, and I felt even worse than had I had years ago at onset.
Since then most of the symptoms have improved, my appetite is not great but I can keep weight on, I sleep a lot less, no fevers, etc. The thing that hasn't changed is the weakness. Most days I'm in bed except for eating, a little time outside, some TV, but that's it. I can't go anywhere, I need help with laundry and cooking, I haven't taken a shower since July. I borrowed someone's laptop and stay in bed and read news stories or listen to audio books.
There's a general weakness and a specific weakness in my legs -- mostly behind my knees and up my thighs. It's painful (I can squeeze my leg wear it hurts and make it hurt more), burning, and does not improve with rest. Some days are better than others.
My Dr. is a nice person, diagnosed me with CFS all those years ago, but very conventional and not knowledgable about treatment. I told him what was going on and he took 8 vials of blood that day, and another four vials the next time, testing me for everything he could think of (lupus, pernicious anemia, muscle wasting disease, other autoimmune, adrenal insufficiency, more stuff I can't remember). Everything was normal except for a mild vitamin D insufficiency (not surprising as I've been in bed most of the summer instead of outside in the garden where I like to be) and borderline iron anemia. I've been taking supplements for those for a couple of months to no avail.
I traveled to see a CFS doctor about five years ago, and she checked my blood volume (low) and gave me a brain SPECT (diffuse abnormal perfusion in the temporal and occipital lobe -- I haven't had a disability review since i submitted that, ha!), and told me to ask my doctor for saline IVs. (It didn't help).
I'm sort of at a loss. My health was to the point where I was hoping to start working part time in a couple of years if it kept improving, my boyfriend and I were discussing engagement. I had adopted a large dog and walked him or exercised him outside every day. Now I'm wondering if I should sell my car and find another home for the dog. I'm not physically (or financially) able to go to another CFS doctor at this point.
I've had a lot of bizarre symptoms come and go but the leg weakness takes the cake. Something really bad happened to me this summer and I don't even know if it's CFS -- I just feel so weird. Has anyone had this or anything like it?
From Fall 2007 to Spring 2009, my family underwent an ongoing crisis involving the fatal illness and death of another family member. There was a lot of physical work to do, which I did gladly until last winter when I started to feel strain. There was also a lot of emotional stress from both coping with the illness and dealing with caretaking issues. In January I got a cold, which happens a couple of times a year, no big deal. Well, as soon as I got over that, I got another one, and then bronchitis, and then another bug, then a sinus infection etc. until finally in June I got a full on three week flu-like hell virus.
Finally at the end of July my health gave in. The family member had passed away, the physical exertion was over, the stress had subsided, a couple months passed but my health just vanished. At first it felt like a relapse but then every week or so it would get worse, until late August when I had a strange, near passing out episode that scared the sh&t out of me. I lost my appetite, lost 5 pounds in a week and a half, had severe bowel changes, fevers, and got this horrible, unrelenting weakness. I became bedridden and started sleeping most of the day. These were new symptoms to me, and I felt even worse than had I had years ago at onset.
Since then most of the symptoms have improved, my appetite is not great but I can keep weight on, I sleep a lot less, no fevers, etc. The thing that hasn't changed is the weakness. Most days I'm in bed except for eating, a little time outside, some TV, but that's it. I can't go anywhere, I need help with laundry and cooking, I haven't taken a shower since July. I borrowed someone's laptop and stay in bed and read news stories or listen to audio books.
There's a general weakness and a specific weakness in my legs -- mostly behind my knees and up my thighs. It's painful (I can squeeze my leg wear it hurts and make it hurt more), burning, and does not improve with rest. Some days are better than others.
My Dr. is a nice person, diagnosed me with CFS all those years ago, but very conventional and not knowledgable about treatment. I told him what was going on and he took 8 vials of blood that day, and another four vials the next time, testing me for everything he could think of (lupus, pernicious anemia, muscle wasting disease, other autoimmune, adrenal insufficiency, more stuff I can't remember). Everything was normal except for a mild vitamin D insufficiency (not surprising as I've been in bed most of the summer instead of outside in the garden where I like to be) and borderline iron anemia. I've been taking supplements for those for a couple of months to no avail.
I traveled to see a CFS doctor about five years ago, and she checked my blood volume (low) and gave me a brain SPECT (diffuse abnormal perfusion in the temporal and occipital lobe -- I haven't had a disability review since i submitted that, ha!), and told me to ask my doctor for saline IVs. (It didn't help).
I'm sort of at a loss. My health was to the point where I was hoping to start working part time in a couple of years if it kept improving, my boyfriend and I were discussing engagement. I had adopted a large dog and walked him or exercised him outside every day. Now I'm wondering if I should sell my car and find another home for the dog. I'm not physically (or financially) able to go to another CFS doctor at this point.
I've had a lot of bizarre symptoms come and go but the leg weakness takes the cake. Something really bad happened to me this summer and I don't even know if it's CFS -- I just feel so weird. Has anyone had this or anything like it?