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cfids/fibro/neuropathy sufferers


blackwolf
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i am going to see a new doc. and i'm NERVOUS! and a little scared he will he call me nuts. he is supposed to be an "expert" in treating the burning sensations i have in my neck, back, ribs, and legs. he is well thought of by someone in the support group i belong to, but.. i'm still nervous

does anyone have this kind of chronic pain, even if only occasionally. i am currently using neurontin at about 300mgs 4 times a day and will be switching to 400mgs 3 times a day soon, mabey 4 times a day? i also use lidodrm patches(lidocaine 5%) that i can wear for up to 12 hours, three at a time, but i feel only a slight amount of relief. i am also useing trazadone(sp?) and ativan to try to help me sleep, but the pain just keeps me up. and even now i am having a flare up. i know one is coming because i get a sore throat and lymphs under my arms get so sore. i also know that i have a rather high sed rate of 50(last test in may). most of the tests as to why i am having so much trouble come back "inconclusive" and i am stuck here waiting for another doc. :):angry::)

thanks for any replies,

blackwolf

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Good luck with the new Dr. Keep in mind, if he does tell you you are crazy then that's your sign to find a different Dr. I know it's frustrating and scary but try not to take it personally....Dr's who tell people they are crazy, don't listen and don't help their patients have problems of their own.

I have pain issues (I have Fibromyalgia) but I am not able to tolerate many meds at all so I really can't help you in that area. Honestly, the thing that has been the most effective for me with the Fibro is mild, gentle stretching and isometric exercises.

I mostly just wanted to offer my support.

Let us know how the Dr appt goes.

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bw -

i don't have much wisdom to add with the specific issues you're dealing with but definitely do understand the fear of going to a new doc as i'm having to do the same right now after moving. i think new docs make me more nervous than when i've actually had surgeries...isn't that nuts??

i hope the appointment goes well.

;) melissa

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thanks poohbear and sunfish,

right now my suport is minimal and i'm having so much pain that is uncontroled.

going swimming for the last time at the public pools, i'm sure it will be fun. i am still concidering joining a club to be able to swimm all thru the winter, but the least expencive is still $45 a month just for me. am i being selfish in just doing myself?

got to go,

thanks again,

blackwolf

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Blackwolf,

I have lots of pain too - fibro and other. Fortuneately for me though, I can take narcotics when I really need it. I am just now trying Ultram... don't think it helps much though. My doc has suggested Neurontin so it sounds like I am behind you in what I am trying. I will be interested to hear what you learn from you doc appointment.

Expect the best from the doc and be prepared to respond to the worst.

AND I must say that, No, it's no selfish to spend money on yourself to swim. If it helps even a little, your family benefits from that so it's really not just for you. I have to try to think like that too - it's hard!

Best of luck,

Roselover

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Blackwolf,

When reading your post, two thoughts occured to me...

1. Have you ever been tested for Lyme Disease, celiac or Epstein Barr (mono)?

2. Have you tried reducing or eliminating the neurontin? I read somewhere (not on this board) about a person who was on neurontin for a long time and started to experience horrible pains and weird sensations. Once they stopped the neurontin their symptoms disappeared fairly quickly.

Well, I certainly hope the doctor you're seeing can get to the bottom of this. I have fibro and experience pain and weird tingling sensations sometimes, but it's not constant like yours. Right before I was dx'd with celiac though, I did experience very similar pains and burning sensations. They were awful. Once I went gluten free though they went away within 3 months. If your SED rate is that high, your doctor should definitely want to run some other tests. Best wishes to you.

Hugs,

gena

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Hi blackwolf,

I can't really help you with this stuff, but I can understand that you're nervous seeing a new doc! You never know what to expect, do you?! And eventhough this doctor seems to be nice we have trouble believing that (isn't it sad?) I think we're afraid doctors might blast us of, as we have experienced that before. So, I want to wish you best of luck and I will keep my fingers crossed for this doctor to be the best!!!

Corina

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blackwolf...

it is completely understandable to be nervous. i get so nervous before a 'big' appt., esp. with a new doc. we are counting on these folks to help us and we never know quite what we will 'get' when we walk into the office. sometimes we get a great doc and sometimes we don't. it's so hard. esp. when you feel soooo crappy you just want some relief. it is so hard not to get our hopes up and not to feel let down if the doc doesn't meet our expectations.

i do hope you get some answers...

emily

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gena-yep, had tons of tests, eb(mono), lyme, lupus, blah blah blah..most testing was normal to inconclusive. and yes, the neurontin was stopped for about 2 weeks, my pain sored :)

corina and emily, thanks for the support. i will probably not be back till after the appoiintment. it is on tuesday at 2:45. so i willcheck in afterward.

thanks again everyone,

cyber hugs all around.

blackwolf

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