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Living with Polyneuropathy CIDP, GBS, & CMT

Pain, pain and more pain

When I was first hospitalized I had a neurologist who didn’t diagnose me despite the pretty classic symptoms I had (I learned that later). I was so uncomfortable, I was miserable. It came on most in the evening and lasted through the night. I don’t think that doc believed me, in fact I’m sure of it; when I left the hospital I was labeled as " anxious" and they sent me home with nothing for the pain… Nothing. I was read tired 36 hours later and fortunately was assigned a different doc. I was diagnosed immediately and started treatment. The pain med schedule was difficult to figure out what worked best, but once it was in place, I did ok. I still have pain, a year out; just not as bad.

Hi 2Ds & 3Cs,
I have 0 bit we do have the pain in common. How have u been? It’s been 1 +1/2 yrs for me since my GBS onset. My pain is debilitating without my Gabapentin which just takes off the edge. This med makes most people tired but makes me come alive again. I’m so thankful I have enough of a medical background to refuse the Loritab my neuro Dr. Wanted to prescribe because I’d be an addict by now I’m sure. I guess I’m one of the 30+% that are left with pain and it’s very tough to think my entire life will be in pain. Any hints for me?
Kathy C
PS I wanted to post this on a “Pain” chat for all to read and help me with, but couldn’t figure out how to do that.

Dear Kathy. hi my name is martin, I was diagnose 2000,and now 2015 still in lots of pain, not sleeping more than 5 hrs. in a good day, legs and shoulders, just all my body aches, hope yours are better. Some people get extreme pain like me, some don't.. hope you are not like me..

Hi Kathy,
I do pretty well with gabapentin too. I teach nursing, so have enough knowledge to understand this is a better choice too. I also discovered amitriptyline is a good choice to help with pain. Initially my primary doc prescribed it for sleep. As I was doing some additional reading, I learned it is also very helpful for the pain. I recently had more trouble with pain, mostly related to increased physical activity; I have been put back in physical therapy but using aqua therapy this time. So far it seems to help, the warm water really relaxes me while excercising. I understand when you say the gabapentin takes the edge off; it makes it so I can generally go about my day. I do know some people use lyrica, we explored that option but stayed with gabapentin. My side effects are ones I can live with when it comes to the gabapentin. Best wishes to you!



Kathy Cooper said:

Hi 2Ds & 3Cs,
I have 0 bit we do have the pain in common. How have u been? It’s been 1 +1/2 yrs for me since my GBS onset. My pain is debilitating without my Gabapentin which just takes off the edge. This med makes most people tired but makes me come alive again. I’m so thankful I have enough of a medical background to refuse the Loritab my neuro Dr. Wanted to prescribe because I’d be an addict by now I’m sure. I guess I’m one of the 30+% that are left with pain and it’s very tough to think my entire life will be in pain. Any hints for me?

Kathy C

PS I wanted to post this on a “Pain” chat for all to read and help me with, but couldn’t figure out how to do that.

I am 7 yrs out from the acute form of GBS and I do have chronic neck and back pain to this day as a result.

I truly believe it was because obtaining the expertise of a Neurologist who could recognize the initial presenting signs at the beginning would have greatly helped. Sadly, that never happened. I was told I had "Fibromyalgia" and good luck finding any Rheumatologist to treat that with any opening to take on a New Patient. I kept trying, calling Neuro offices locally. As soon as I identified what was happening the only thing I was told was "we don't treat anyone with a neuropathy (sensation loss anywhere)".

In desperation I ended up having to see a Fee For Service Rheum who was a royal piece of work, billed by the hour and had office appts that were 4-5 hours long accordingly (no lie) just cuz $$$$. He called my Internist, once, to tell him only HE was in charge and would not be providing any updates, records or any diagnosis- and he kept his word on that.

I was Lab tested for every disease known to man. At the worst, I still recall have blood drawn at 1 visit that required 19 tubes of blood. I have no idea how I stood up after that. The only thing he did right was send me to have a Lumbar Puncture done at an Outpatient surgery center up the street from his office (thankfully he didn't perform that test) that resulted in a spinal headache for me and an ambivalent test result finding. The other was to send me to a Neuro buddy nearby to have the excruciatingly painful Nerve and Muscle (EMG/NCS) testing done. I asked the Neuro at the end what he thought was happening and he said "Guillain Barre". I then asked if I could transfer my care to him as I knew GBS was Neurologic and he said "NO". Apparently, continuing to get referrals from his Rheum buddy was more important than helping me, a patient with obvious signs of GBS who would have greatly benefitted from having a Neuro to direct treatment.

In the end, I went thru the entire horrible experience at home, alone during the day while my spouse went to work. Had 2 ER visits in the first 5 days when the symptoms began for really severe neck pain (a cardinal presenting sign). I had never had ER services in my life prior to then. On the 2nd visit, I refused to leave til I was seen by a Neuro (it was a weekday so I knew there had to be a Neuro in seeing patients somewhere in the hospital). Waited 6 hours with no food or water provided and when I saw the Neuro he did a cursory exam, said zippo as to what he thought I had and told me I could be seen as an Outpatient but Never offered to have me go to see him in his office.

Roadblocks everywhere with no help provided at all. Got weaker and lost function by the day, becoming profoundly incapacitated. GBS usually starts in the feet and works it way up the body; as it subsides, the reverse it true. So I lost all sensation in my feet then my legs. Lost an ability to hold anything beyond a piece of paper. Lost grip strength in my hands so couldn't hold a glass or cutlery- had to eat with my hands, sort of, and lost 22 lbs in less than 7 days as a result. Being dehydrated didn't help.

No surprise, I became very weak. Fell at home, alone, and was down on the floor for more than 2 hours as I couldn't heave ho myself back into an upright position and had no furniture to even hang on to. After many many attempts I finally got up on my knees and then leaning against a wall I managed to eventually stand up.

By then, the body shuts down as a protective mechanism. I lost the ability to think clearly and could not even tell my spouse to get me to the nearest ER. When the neuropathy reached my chest wall, I became severely short of breath with any movement I tried.

I have the health care background in my family. My spouse looks to me to direct health care services and always has. He was more grumpy at getting home from work then having to make us something to eat, clean up the kitchen, take care of our birds and do a variety of household chores I took care of even while I was working full time too. While he saw me with his eyes, his brain didn't, waiting for me to tell him what had to be done. It was a really horrible time in my life. To be abandoned medically multiple times didn't help either. And no, I don't live in a small town. I live in So California .

I very very very slowly eventually regained function. By then, the FFS Rheum told me I had a chronic neuropathy and to go see a Neuro for treatment- way too late to have had any treatment whatsoever. 2 months later when I was back to a more normal baseline again to actually be able to do some things, I went to see my Internist as I thought I had a clot in my right leg. He directed me to have a test done at a local hospital the next day. Not only did I have a clot from above my knee down to my ankle, it had broken off and had gone to both of my lungs. For the 1st and only time I ended up hospitalized as I required heavy duty blood thinners. Finally, some hospital level of care even though it was way too late. Ended up having to be on a blood thinner for 8 months as directed by my own Internist. He told me later when he was seeing only patients with pulmonary conditions at UCLA years ago, anyone who presented with the degree of clot involvement I had would have a more than 50% mortality rate.

Finally saw an Excellent Neuro at Cedars Sinai as an Outpatient. He correctly retrospectively diagnosed me as having had the acute form of GBS and told me it was way too late for any treatment. The treatment in 2009 is the same as it is in 2016: either IVIG or Plasma Exchange daily over 5 consecutive days.

The upshot of all this is the damage that was done. I still can't feel my toes, my balance periodically is "off" with no warning etc. Worst of all is the chronic pain that I will have for the rest of my days. All of that and more because I couldn't find a Neuro who gave a Crap or had the brain power to recognize the presenting signs of GBS and acted while treatment was still an option. The pain is constant while I am awake and involves my neck and spine.

That said, for anyone left with chronic pain it is really essential you find a Pain Management Specialist to help. It is best to see someone that is with a University level teaching hospital or a Tertiary center of some sort. I am resigned to the fact its too late to "Un Do" the damage done and will have this problem for the rest of my life. I am smart enough to know I don't want to spend the rest of my life drugged up/addicted to strong narcotic medication either.

My sympathies go out to one and all who also end up having chronic pain. It isn't a picnic. I truly can relate.

Don't give up though. Damage done can't be undone But with the right sort of help, it is possible to live a life not too too restricted. Take a swim class or water based exercises, see a really good Pain Management specialist whose only response is Not to write you RXs for powerful narcotic pain killers such that addiction on top of everything else becomes an issue, walk, travel if you can tolerate it and in short try to enjoy life as best you can.

Most importantly, know there are others facing the same thing you are and/or have experienced the frustration, fear and pain from the get-go symptom-wise and really know what you are going through. Reach out and try to be supportive to others in the same boat.