Oh hon! Im so sorry about whats going on with you! I havent had that happen hon. I truly hope you find relief!

Hi !!
I have not had a loss of feeling...

but I do get tingleing sensations on my skin...and like when in a hot bath the water actually feels Cold on my legs...

there are so very many different things you will experience with FM/CFS...some physical....some emotional...I to have had to give up work....that has been devestating...not finacially for me...but emotionally...I am SOOOO not housewife material....but is unfair to anyone who hires me because I do get sick ALOT still....{have not yet found the right formula to get me thru each day}


so stick around...pretty fun loveing open group here...am brand new to THIS site...and I think I have found my place...I feel quite cozy here...


Bonnie

Hi, Catfisher....

So sorry to hear of your situation. No, I haven't had a problem like yours, but I can be praying for you. And, praying that you will find a doctor who can help you.

A friend,

My name is Cleveland

I loose feeling every so often in my limbs but I also have a brain tumor which according to neurologist is reason for it. Have them do MRI and or Catscan and see what comes of those. Hopefully nothing.

Ty all for you info. I talked to the nurse a little bit ago. He has OK'd me to go see a Neurologist, so I am waiting on that call for the appt. This is such devistating news. I don't know what I am going to do.

Numbness and weakness where some of my first symptoms. They ran all kinds of scans and blood test, and came up with nothing. They still say they have not completely ruled out the possiblity of MS, however mostly it has been chalked up to fibro. You should have them run test to rule out anything more serious though. Hope you get some relief soon.

I understand the feeling of not being able to work. I haven't worked for years. My mind want to "do something" so much but the body stops me. I can't keep up with anything for any extended period of time. I may start something when I'm having a good run of a few weeks or so (usually in the summer) but it doesn't work. I am currently sick with a bad cold, which I should be over by now, but my body is exhausted from the Chronic Fatigue/Fibro. I thought yesterday that I was improving and that today I would start to get out of bed and do some laundry. It seems like an impossible task.
Sorry to go on and on. Sometimes I just can't take it. I've been ill for over 30 years.

yes I had it to. that was what sent me to the doctor. I would wake up and fall flat on my face when I got out of bed. then I started with the exhaustion, by 1 p.m. I was finished.. it does get better, when you figure out what combo of things are going to work for you.. lots of love and many hugs. kimmy

I am so sorry but please try to stay calm and get into the doctors. Let us all know what you found out. We are here to support you. Good Luck Hon.

Hi Catfisher -

In this remark: "A month ago I had to quit my job because of the pain. I just could not go to work & stand for 4 hours without a break anymore... Moving constantly." - I TOTALLY UNDERSTAND AND RELATE EVERYDAY!!

I, too, went through a period of not being able to work while the docs and I figured out the right combination of meds so I COULD work. The State refused to help, SSA was a joke, and I ended up going broke and eventually filed bankruptcy - and lost my house in the process.

However, I SNAPPED back into the swing of things gradually and with determination. I love my career - afterall I spent $40K on it and have to pay that back!! I know where you are as do most, if not all, of us. We completely know about not being able to get out of bed, far less do our job. I'm a service manager for 3 apartment communities and I do NOT like being in the office all the time. I like to get my hands dirty and be right in the game with the rest of them. Then again, they know I'm 'watching' them so they can't sleep in a vacant - LOLOL.

What I hated to read is that you're scared - and that being said, you've come to the right place. Have NO fears in here. We're all here for the same reason and we all respect each other as they wish. I know the pain of a physical job as mentioned earlier; I missed that for almost 2 years. I've been on my feet, as best as I can, since July of last year. Sure I still have HORRIBLE days (Flares) where I cannot do anything. I have to live on meds to make it through a day which I detest!! I feel ashamed for having to rely on pills to do it. HOwever, I do it :).

While I won't speculate as to the leg issue, I will say that I lose feeling in my legs during a flare, particuarly my feet. I actually will comment that the Fibro "might" be related despite the rheum stating otherwise. Fibro is an "unknown" as-is and I do not really believe it can NEVER be attributed in some way to other issues. Further, during a flare, my legs are on FIRE!! It's one or the other - but only consistency is pain pain and more pain. The more I do, the worse it is. I wont change my job and let this rule my life either!!

I know this is probably not what you want to hear my dear. However just know that sooner than later, you WILL be back to what you do best. Embroidery is a huge skill in itself correct? Even though it is machine-aided, you still need a good eye, hand, arm, etc. I congradulate you for that :):)!!! I hate it too that you cannot do what YOU do best; just remember though, we're all here to help in any way we can. Vent if you want, cry if you want. We will help you through it. Just be honest, stern, and open with the doctors. Tell the doctor just like you told us - you LOVE AND MISS YOUR JOB AND YOU WANT IT (AND YOUR LIFE) BACK!! If this rheum doesn't want to help, there's always others out there. I always say keep going until you find one that DOES listen and DOES help.

You'll make it hun. I know you dont think so now, but you will. Heck I'm trying to NOT take any narcotic meds - which is causing me even more pain but I feel ashamed for having to live on them to get through a day. I have fear too - fear of being in agony by my own choosing. Fear of being ashamed for taking the meds I do. Here I just contradicted myself because I said don't ever be scared yet here I am fearful of shame!!

We're all in this together and while I am not always on here as much as I like to, you will always get a response within minutes. I will surely help in any way I can by being here for you and everyone else as much as I possibly can.

For me, you're an inspiration - you refuse to give up!!

Hugs your way,
Niko

First of all, Niko I admire you for working regardless of your illness. Do NOT be ashamed for taking meds for your illness that you have little control over..after all, the only Superhero in this room is me ; )
Catfisher, do you have a support system in case you have to file for disability. It is taking me two yrs to get a hearing. I filed in March of 07 and finally have a hearing April of 09.
I had pain for over 20 plus yrs. This after an abusive, violent childhood, then abusive relationships, then a near fatal car accident where I spun around twice on a highway after losing control of the car I was driving.
So after ignoring the agonizing pain in my back and neck...I finally gave in and filed for disability.
It broke my spirit and my heart temporarily to do this as I had been able to fight it for so long.
You will need loving, warm, and supportive family/friends during this time. That is crucial to minimizing your stress level which is an ENEMY to your body. I am sitting here listening to Toni Braxton wiggling my neck and just relaxing lol. We have to take mini vacations in order to keep our pain to a bare minimum.
hugs hon and we are here for you.

It sounds like you do indeed need a neuro.

Im so sorry for all that you are enduring. My heart goes out to you.

Hugs

Thanks to all! There has been So much going on in the last year.. I went through a sour, bitter divorce in June. We filed in April. In May of '08, I moved back home closer to my family. It has been on again off again since then. There has been a LOT of stress in my life with things that are going on. I ended up having to go to the Dr. yesterday and get put back on some meds. The Neuro in TX was an ass. He didn't want to help me out in any way shape or form. Also, SS, SSI, SSDI, etc. was nothing but a farce when I was in TX. I couldn't even get an attorney to help me because I am under the age of 50.... WTF????

I had a job as a waitress for about a month. That did not work whatsoever. By the time I got off work, I could barely walk. I ended up having to quit this job. Now, I can't find a job. It is very tough around here to find work. IF and WHEN I do find something, I don't know if I will be able to do it. I explained that to my Dr. yesterday. He said he understood completely and he sympathized with me. He did say that getting on Disability is going to be VERY rough. Just what I needed to hear. It all sucks! I'm sick and tired of being sick all the damned time! I just want it to go away and be a "normal" person and do "normal" things again. However, I know that is NOT going to happen.

As far as someone for support, I have a couple people that I can lean on. But, not many. It's better than no one though. I am going to call SS this week and try to get the ball rolling again. I will more than likely have to start the process ALL OVER since I haven't done anything with it in a long time. I got tired of the denials and once I moved back to my hometown, I gave up for a while.

OH! I forgot to mention that I not only was DX with fibro, but TMJ and bursitis of the hips, as well as clinical depression. The Neuro wanted to do a nerve conduction test on me, but it is VERY costly and I didn't have insurance and my hubby (X now) wouldn't help with the Dr. bills as he said that "I was not his responsibility". I don't know what is going to go on now since I am back in my hometown and seeing my regular family physician. He is one of the best Drs that a person could have though. I'm sure he will do anything and everything in his power that he can do to help me out. When is the roller coaster ride going to end? Will it EVER end? Life sucks! Don't get me wrong, even though life sucks, I am NOT going to do anything stupid. I treasure my life, even though it sucks and is painful.

I havent but I hope you find out soon WHAT is causing this.