I need support - unconditional - today please

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I need support - unconditional - today please

Postby mstwitch on January 23rd, 2004, 3:13 pm

Hello and thank you for listening. I have Benign Cramp Fasciculation Syndrome and have absolutely no worries of anything other than that going on with my muscles. What I am having the most difficulties with lately is the pain level that has seemed to reach new highs. I had been undiagnosed for six months with pain, then finanally diagnosed and treated with Neurontin for the last three months with some level of success. For whatever rhyme or reason, the meds have stopped working and I am worse than ever. I have just started a new medication yesterday (I know I need to give it time), but I feel like I cannot cope any longer. Sleep evades me, migraines increase, and the legs are excruciating! I am not one to complain. I just don't know how to cope any longer. What do I do? I do not want to wake up in the morning to face the pain. I am typing through the tears right now. Our family has been through so much (and my condition pales in comparison)...so why am I falling apart now...why am I not coping? I know there is no easy answer. Just thank you all for letting me vent, as I do not like to burden my family or friends with this as "I look so healthy" to them and they would not understand. Thank you again.
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Postby uber on January 23rd, 2004, 6:10 pm

mstwitch Im sorry you are in so much pain, im lucky in the fact that i dont get much pain at all in my muscles, they feel a little achy now and again but thats it. However the stress brings on killer migraines and tension headaches and I know how bad they can be, it feels like your head is going to explode, and on top of that your eyes ache and you feel dizzy.

im not being funny when i say this but have you tried any unofficial pain killing methods?? not that id recommend it but smoking cannabis can really relax the muscles, also you should talk to your doctor about diazepam, it helps me a lot when im suffering from bad tension.
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Postby SusanSid on January 23rd, 2004, 8:18 pm

mstwitch,
Sorry, I don't know your first name. I'm also sorry to hear about your pain. I know many have had it, others have not. I personally have had days where my feet and hands just hurt, the muscles, the skin, everything. Then it seems to go away.
I don't know what meds you are on other than nuerontin but if you don't feel better by Sunday, call your doc on Monday and get an appt. and see what your options are. I totally believe that tension adds to pain, as well as lack of sleep. Sleep is critical for so many. If you're stressed, not sleeping, it's no wonder the pain is so bad.
If nothing else, I'd work on the stress component, it can only help. However, you shouldn't live like this, so call your doc if the pain isn't better soon!
Sue
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Postby jcavan4125 on January 23rd, 2004, 8:44 pm

Hi,
Sorry to hear that you are doing so poorly. A couple of suggestions to run past your doctor. I don't know what dose of Neurontin you are taking but I know it has a pretty wide range of dosing. 800mg three times daily would be a common dose and I have heard of neurologists prescibing much higher than that. Also amitriptyline in small doses at night is often used with some benefit in patients with chronic pain. Anti-inflamatories on a daily basis might help and lastly, Ultram is a non-coltrolled medication used for chronic pain (though I have heard it has some addiction potential)! Hope this is of some help! Good Luck!!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Jenn311 on January 23rd, 2004, 8:48 pm

Have you been worked up for fibromyalgia? And have you had an MRI of the spine to make sure everything is in working order? My mom has been in terrible pain for a long time...and the doc. thought it was fibro, then peripheral neuropathy...and then the final diagnosis of spinal stenosis...or narrowing of the spine which was causing her bones to press on her spinal cord. She will have surgery next Friday which should ease some of the pain. Hopefully!

I am sorry to hear about your troubles...hang in there! It could be MUCH worse.

Take care.
Jen
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Postby kazar on January 24th, 2004, 6:47 am

I have no other suggestions to add to those already sent, but I just wanted to add my best wishes for a speedy solution to the pain. Let us know what happens if you go to your doctor on Monday.

Karen
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Re: I need support - unconditional - today please

Postby Florian on January 24th, 2004, 1:39 pm

mstwitch wrote: Our family has been through so much (and my condition pales in comparison)...so why am I falling apart now...why am I not coping? I know there is no easy answer. Just thank you all for letting me vent, as I do not like to burden my family or friends with this as "I look so healthy" to them and they would not understand. Thank you again.


What can i say? Only i understand you very well and you are not alone with it! I and a lot of people here feel with you in this moment. Be strong and hopefull and i dont know why, i believe that you will have painless time in the future! Sorry that i cant explain realy but some know....my english is very limited.

Greetings

Florian
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