Hi, I'm interesting in comparing illness trajectories with anyone who was diagnosed at a young age.
I was 12, just had my first menses, and developed a typical sore throat/fever illness. The only difference was I was fatigued. About a month later, had joint stiffness and pain in my knee. Slowly the pain involved my hands/feet, elbows, and neck joints. About two months into the illness, I developed Bells palsy, which is a paralysis of one side of face with loss of taste on one side of tongue and inabilty to smile/wink correctly. After 2-3 months, the palsy went away, but the joint stiffness/joint cracking (crepitus), muscle spasms, brusitis and pain stayed. About a year later I regained my energy, but I still get fatigue if I overexert or don't sleep enough. I don't really have touble sleeping although when I wake I am in terrible pain/stiffness.
I'm now 25, still have the pain, and have not improved over the years, just slowly getting worse. I'd like to hear from others who experienced anything similar- excluding those who have other illnesses (IBS, or other autoimmune) and older patients.
It's my belief that FM that develops in otherwise healthy younger women is different from that which emerges in adulthood, and it needs to be studied as such. Thanks for your help!
I'm going to address your post, even though I am older. The reason is because, many of the older people here have been through decades of being ill with symptoms from fibromyalgia. This means that many here suffered in much the same way as you, since their teenage years. Prior to being dx'd, at that time in life, we too felt that we were "otherwise healthy".
You were 12 when you began having the problems you outline above. I was 16 when I began having balance issues which lead to fibrositis, costhrochondritis...etc. It presents itself at different stages in life. Otherwise, I considered myself a healthy younger woman. What i'm expressing here is that mine did not emerge in adulthood...it just went undiagnosed in earlier years by being labeled as something else.
I'm interested to see how others may respond also.
Here is a post that was written in the autoimmune diseases forum. The MedHelp member who wrote this is only 17 years old and has had health issues since she was 10 or 11. It certainly sounds like she falls into the category of fibro, CFS or lyme disease:
A theory as to what happens when we suddenly become chronically ill. It is like lyme disease. You can be exposed to the lyme disease bacteria and yet have no symptoms. And then you have a viral infection or a stressful event in your life and then BAM ! .... you suddenly have symptoms of lyme disease and/or a lyme disease diagnosis.
I think I was tested after the palsy developed. I'm requesting my old records because I don't know what was tested, and after learning the false-negative and the sensitivity of the lyme test is flawed, I'm curious which test was ran. They empirically gave me 30 days of doxycycline by mouth at the time, but I've also read the CDC recommends IV therapy and that sometimes it is caught too late to be effective.
I would seriously look at this as a possibility. I just reread your initial post and it looks so much like lyme, particularly with the Bell's palsy and the fact you have never recovered fully. Your FMS could be a treatable illness. I've had problems since a bullseye rash from 1992 (which was not treated for over a year) and the neuro problems were already profound. I have recovered a great deal after antibiotic therapy but I am far from normal. I personally don't think lyme is curable at this point in the illness. I have never had a positive test or IV therapy. I have had long periods of remission where I was almost normal then it comes back again.
I agree with you. It seems that if it is caught early on, it has a better chance of being handled. However, if enough antibiotics aren't given for the right amount of time, then it can remain.
You comment that you had the rash in 1992. When did you notice your symptoms becoming more serious? I am a bit concerned because in 1985/86 I was in a wooded area and recall having a round rash on my lower leg shortly thereafter. I would say that I prob. didn't see a doc. until a few days later, and they had no idea what caused it. They treated it, but I can't remember if it was something orally or a topical cream. The thought never crossed my mind that is could have been lymes until I saw pictures of those with the rash. Apparently, not all of them develop as a bright red ring with a bulls-eye. Now I find i'm having many neurological symptoms that are unexplained.
The first symptom I remember started after the rash, probably a couple of weeks or so. It was SEVERE eye pain and floaters. The tears would run out of my eyes like a faucet all day long. Then it was one thing after another for the next few months...rashes, roaming joint pain and swelling, nausea, fatigue, fevers, diarrhea. The neuro stuff hit about 7-8 months after the rash. Numbness, tingling, dragging of a leg, weakness, twitching from head to toe, constant ear ringing, brain fog, elevated liver enzymes, blurred vision and the rashes were unbelievable....whole body, giant sized in places. I had a huge, circular rash that took up the whole thigh. There was a lot more too. Too much to write. All my tests- spinal tap, MRI, EMG all came back normal. The neuro told me I had a central nervous system disorder but that he "had no idea what it was".
Thank you for the info. patsy10. So, the neuro is treating you for lymes, but he really doesn't know what is going on because all of your other tests have come back negative. I sure pray that it works for you. Sounds like you have had a horrible time.
It seems like they don't know what causes most of the neurological illnesses, but treat symptoms.
Actually, I am not on any treatment right now. The neuro's were useless except for telling my what I didn't have (MS) and giving diagnoses like FMS/CFS without even checking for tenderpoints. I was treated by an out of state doctor as I could find nobody in my state. It worked but it always creeps back after you stop the antibiotics. I just have to live with what I have. I just don't have to strength to drive out of state anymore.
You are correct about them treating the symptoms but not knowing the cause. For myself, I am not a believer in treating symptoms. I believe in treating the causes. I don't take meds except for something to help me sleep sometimes.
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