Quote:
Originally Posted by boiler1993
Thank you, are you currently taking anything? I would never say it won't work for you or anyone, I have just learned to be cautious, sometimes side effects can mask themselves or sometimes you may not even realizing it is the medication that is causing a problem.
What type of allodynia do you get? I have this symptom as well. It is mainly sensitivity to the clothes around my "trunk" as the docs like to call it (aka sides, back and stomach). How spread out do your flares seem to be? This is what really perplexes me. My history has been three years ago I had my first bad flare and it lasted about 6 months of sensitivity to my clothes. Then the occasional mild flare in between. Next big flare was a year later and lasted over 6 months. Again have had a week long flare here and there since but nothing consistent/long term. What kind of pattern do yours follow? You would think the "flaring" pattern would tell docs something but never seems to interest them when I bring it up. It has been about a year since that last flare (although I took Lyrica in between so that may have helped keep it at bay) and now a month medication and flare free.
I completely understand the feeling when you feel so good and then hit that huge flare. Again you are not alone! It is hard for 20 somethings to accept these things as well especially the uncertainty! I still (even though I know it is foolish) cannot accept that another flair will occur. I really do wonder if it will happen again and feel hopeful it won't. But this will be a harsh reality to re-enter if/when it does flair again.
Hyperexcitability was a term they used a lot with me for the first couple of years. Do you have any other symptoms? I also get some triggered sensations that come without flairs - like the feeling of water running down my legs when i get too warm or sometimes when I am cold I feel like I have bugs crawling on my legs. Weird stuff but all I can handle.
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Hey boiler!
Thanks for the reply. Wow, your pattern is very similar to mine.
I had a slow onset of symptoms, and gradually allodynia (sensitivity to clothes, mainly in arms and legs) developped. The first flair lasted 6 months and then the symptoms disappeared. During two years, I had like 6 or 7 minor flares where symptoms lasted only 1 week or more, and then disappeared. So I thought I would be OK eventually! But in october, wow, biggest flair. Full body (and I mean full, with newly my neck involved) allodynia, burning in hands and neck, intolerance to bed sheets during one horrible week. Since then the symptoms seem to very gradually go. But it takes time ! And I am scared to not have found a doctor that will try a treatment.
I have stopped Lyrica. I think I had a too low dose to help. And I can do without so it is good. But I think my life has reached a turning point as I am anxious of the future and I do less activities than before (I am a tennis lover and have not played for months due to clothing hurting).
Again, our patterns are very similar. I am just like you, I am sad that doctors do not seem to try to understand that. They are just like "yeah, neuropathy symptoms can come and go".
I strongly believe that my issues are auto-immune following lyme infection. I have always thought that, it makes so much sense. So I am glad madisongrrl confirms that to me!
So how are you doing these days? Living a pretty normal life?
All the best!