About 8 weeks ago my neuropathy had a rather painful flare up with the same symptoms moving to other parts of my body. Previous to this flare up my symptoms were predominantly from the waist down with the odd bout of pins and needles in my face. The latest flare up saw the previously experienced burning and pins and needles spread to my arms, burning also occurred between my shoulder blades and right side of my torso. I also started getting the pain previously only felt in my legs in my feet, wrists and hands. My symptoms have always developed slowly and only sometimes having an impact on muscle strength. With this last flare up I started having to get lifts to work and had to take the lift and not the stairs and had difficulty washing my hair and pegging out laundry. Anyway rang and made an appointment with my neurologist and also confirmed that in the meantime it was ok to increase my endep. I was convinced that this time he would have to start treatment to stop the spread of my neuropathy. The time for my appointment finally arrives, and my neurologist says that I have fibromyalgia. I say do you not think that the cause is the spread of my neuropathy - he says I have no doubt that your nervous system is all over the shop. I ask why would my symptoms get worse at the same time as my flare up.he advises that this is due to a constant lack of sleep. I try to explain that lack of sleep is not a major problem, that the frustrating part is that I am often in bed asleep very early, and that most nights I get 10 hours sleep. Anyway he doesn’t do a nerve test to check if the neuropathy has spread to my arms. He does tell me to take up swimming preferably in warm water, says that the side affects of the increased endep are outweighing the benefits and writes me two scripts for lyrica one for 75 mg and one for 150 telling me that I will need to cut the endep back to half a tablet and gradually increase the lyrica up to 225mg twice a day maybe even 300. The change in medication was pleasing but the lack of any further testing is not.

I feel like the addition of fibromyalgia was a fob off. He seems so determined that my neuropathy will get better on its own. On my very first visit he said it was cidp, on my second he said it was a mild case of guillan barre and that I was getting better because his nerve test had shown improvement from the first one done by a different neurologist.

I felt and feel hurt and frustrated. I do feel that while he initially is listening he quickly jumps to conclusions and once having reached this conclusion he turns his ears off.

I was once a person who believed that doctors were the holy grail of human beings and whatever they said was right. Mind you I had never really seen a doctor for anything worse than a cold or for sinus problems.

I am also someone who likes a day or two to digest information. He didn’t even explain fibromyalgia and me being me didn’t think to ask. I have since consulted dr google and feel convinced he is wrong.

I am going to give the change in medication 6 weeks and will also start going to the pool just so I can tell him I gave it a go. Then if there are no improvements I am going to ring and make another appointment and ask for another nerve test to be done (note the very first nerve test showed absent or prolonged f waves, when he did his nerve test he said he only had to zap me 12 times before he got a response.

Prior to the cidp I was running up to 50klms a week and he seems to also be convinced that I should have taken up running again. I tell him I am having trouble getting up stairs so I have no chance of running at this current stage.

I don’t know what I hate more the way doctors make you feel or my inability to deal with them more forcefully without actually being rude.

When neurologist number 1 did my nerve test she told me to bring my handbag because I wouldn’t be there for long as there was nothing wrong with me and it was all in my head.

Anyway I know others suffer a lot worse then I do but it has been almost 18 months since my neuropathy issues started and slowly but surely I feel it progressing. I hate and resent the changes to my life and my body but I deal with it because there is no choice. The only thing that really varies is my capacity to deal with it in a positive manner.

Bean, your last paragraph describes how I’m feeling right now! And like you, it’s been about 18 months since I began my CIDP journey, though at the beginning I was treated as though my symptoms were coming from my back. I finally found a good neurologist at the beginning of July who quickly got me in for the usual tests which led to my diagnosis in August.

Hang in there…keep up that positive attitude!


I was just diagnosed Aug. 28th. That was after 13 months of hell. Went thru all the usual tests. All came back normal. Seen a specialist and he finally wrote in my medical record that I was faking it and it was all in my head. Saw a neurologist at the University of Iowa Med Center. She was wonderful, but said I had MS. She didn't have my test results (primary dr. was suppose to send them to her and didn't), was just going by my symptoms. So went back to my first neurologist and was told the only thing I could have is CIDP. He said he was sorry, that if I needed anything to call his nurse. And left me hanging. I have no insurance so no treatment. My condition is getting worse. It's hard to be positive when you feel so bad and have so much going on. No one understands what you're going thru.