CMT and Pain

There are many different symptoms that identify CMT. Not only is our condition the most commonly inherited neuropathy, but it also manifests itself differently from patient to patient. One of these symptoms that I would like to discuss, which is not exactly accepted by all doctors, is pain.

According to Wikipedia, pain is an unpleasant feeling often caused by intense or damaging stimuli, such as stubbing a toe, burning a finger, or putting alcohol on a cut. The International Association for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."

Pain is what led me to my Charcot-Marie-Tooth diagnosis and my pain has evolved over the years. Back then, I had pain on the balls of my feet because of my calluses and felt pain with each step. Then I began having a lot of "charley horses," pain in my calves, which I still have to this day. My most challenging form of pain wouldn't make its appearance until years later - my thighs. It's a strange form of pain, hard to describe. It feels like pressure, as if there is something permanently suffocating my thighs. This last type has become my biggest concern as it just refuses to go away, ever! It's my companion 24 hours a day...always present in my life. As I have described in earlier posts, I have started to take medication and do therapy that help give me some relief. However, many doctors still do not accept the idea that CMT causes pain. They try to tell you that you must have another unknown condition. As if one invisible disease wasn't enough! 

It can be extremely frustrating to try to persuade a medical professional of a symptom you have that is being caused by an actual diagnosis you have. The more and more I speak to different CMT'ers throughtout the world, I am convinced that pain indeed is a symptom of CMT. It would be great if we and the professionals who can help us were on the same page.

I wanted to write this post because I recently found out about an organization that very much cares about pain and is doing everything it can to help me and people like me. One of my dearest friends from church and I have always had a very special bond. She has a neurological condition and also has feet and pain problems. I always say that she's my body double! She recently attended a conference organized by the International Association for the Study of Pain (IASP), mentioned in Wikipedia quote above. She returned from this event extremely excited because this is a very serious organization, highly respected in the science world that focuses on research about pain. She told me that there were over 7,700 individuals from all over the world at this conference; discussing updates, presenting new ideas, and exchanging information. All of these professionals had one goal in mind: helping to alleviate pain, physical or emotional.

Over 1,000 professionals during one of the sessions.

I just wanted to share this information because it gave me a lot of hope and maybe it can do the same for you. It's great to know that there are thousands of people out there looking for a way to help ease our pain and suffering, and not only professionals in the CMT field. I am not holding my breath that there will be a cure in my lifetime, but I am very hopeful that I will be able to live happier, less pain-filled days sometime in my future.

FINALLY...Something's Working!!!

As someone who has tried such a multitude of medications, you're always a bit skeptical about starting anything new...and the new prescriptions I got didn't exactly start to work right away, as the doc said it would take a couple of weeks, but it was driving me insane to deal with so much pain...and with that much pain comes tears, emotions, etc etc...

However, they FINALLY kicked in about 10 days ago and I have been feeling GREAT!!! My pain is down to a much more manageable level and I'm even waking up pretty pain-free, compared to the mornings when I'm writhing in bed with pain and it takes me a while to get up. I can't even begin to explain how grateful and relieved I am!!!

Unfortunately, my insurance did not approve the medication for the chronic fatigue (something about it not being FDA approved), so I will have to wait until my follow up appointment next week to see if we could try something else to give me a boost at the beginning of the day...I am just praying that these meds LAST! I could use feeling a little normal for a while :)

New Prescription Cocktail

Ohhh the life of a CMT'er!!! To try over and over again to find a set of medications that may help improve our quality of life, battle constant chronic pain and possibly lift us out of our chronic fatigue. I have searched high and low for different doctors, different types of doctors, new meds and I'm still searching for something that will help me - as I am sure are many people with CMT and other neuropathies.

One of my fellow pool therapy buddies recommended I go see her pain management doctor who helps her a lot and he is located in the next town over so I figured I should give it a shot. I made the appointment for yesterday and the hubs came along with me (it's always good for me to go with someone because I can NEVER remember everything I plan to say or ask).

We arrived for the 12pm appointment and weren't called in to the office until 1:30pm!!!! This is one of my BIGGEST pet peeves. What is the point of scheduling a time if you're going to keep me waiting so long? And, in case you missed it, I am going to see the doc for pain, so to leave me waiting that long is not making my body feel any better. We almost asked for the co-pay back and walked out when they finally called us in. My first impression so far was not good.

Thankfully, the doctor was very nice and helpful. I am only his THIRD CMT patient ever (Shocker!) - I am just glad at least that I wasn't the first! He listened to my entire history and we begun discussing what could possibly work and what approach I should take. At the end of our chat, we have added 4 new meds to my daily routine to start off with - well, 3 new meds and 1 vitamin. Two of the meds are for pain and one is for chronic fatigue, which is honestly the one I'm most excited to try.

I am cautiously optimistic about the possibilities and hope at least one of these will help me find some relief. The plan is to try them out for a month and go back to him for a follow up. I am crossing my fingers that I have good news then...wish me luck!

Out with the Old, Dizzy with the New...

The anti-inflammatory my surgeon prescribed really didn't help at all...I didn't feel any change the two weeks I was on it. When I saw my pain management doc he wanted me to give him a call in two weeks to follow up and see how/if the medicine was helping. We spoke on Tuesday and I asked him if we could switch from that one to the pain meds I had heard about. He gave me a new prescription which I started taking that night (more on that later).

I also told him how I don't feel that the 30+ pills I'm taking every day are helping me at all. I'm just as tired, exhausted, fatigued, and have no energy. It's been more than 2 months since I started taking them and if they're not helping me out, I'd rather get off them because 1. It's not fun taking so many pills and 2. They cost an arm and a leg! So we agreed that I'll call him in another 2 weeks to let him know how the new pain med is working out for me and at that time, he'll ask for all that blood work again. He wants to compare my first results with the new ones to see if there's any difference.

I started taking the new pain med on Tuesday night in conjunction with the anti-inflammatory. He wants me to take them together at first to try to get the best result possible and then if it works we can scale it back. Well, I have woken up all this week so rested and refreshed, like I'm not waking up with a huge weight over me, and the pain level has been significantly lower. It's actually been SOOOO amazing to wake up like how I would assume most human beings do.

The only downside has been the side effects, which has me really dizzy and groggy! It's been hard to be in meetings at work - falling asleep in front of your boss - NOT COOL! Oh and they also had a belated surprise birthday party planned for me on Wednesday and I felt so dizzy John picked me up so I spoiled the whole surprise...oops! I'm just hoping my body gets used to the meds so I don't have to stop taking them because I'm enjoying feeling lighter :)

I'm Officially a Pill Popper!

My supplements finally arrived in the mail today!!! As much as I am not looking forward to taking all these pills every day, I'm really excited to see the results!

Wish me luck!!!

Healthy, But Stressed!

I had my follow up appointment with Dr. Kessler this week and I am really excited about the treatment options we discussed. He mentioned again that he obviously won't be treating CMT, but will be doing as much as possible to help my body have more energy and to feel better.

Overall, I'm pretty healthy (who would've thunk it!), but my body is stressed. No diabetes, no lupus, no thyroid problems, no lyme disease, blood pressure is fine, etc, etc. Then on to where the body needs help...one of my thyroid hormones (T3) is a little higher than usual which makes my body sluggish. My hormones are unbalanced, my progesterone is really low and my estrogen/testosterone levels are normal, but on the low side. My stress hormones are pretty much sucking the life out of them and it makes me feel like I have nothing left to give.

One interesting fact is I should not eat mercury fish under any circumstances, which is mostly ok by me, except for the amazing tuna sandwiches that John makes that I'll have to give up :(  The body usually takes 2-3 weeks to get the mercury out of its system, mine is doing it in 6-9 MONTHS!!!! My digestive system is also not doing so good, I may not have enough stomach acid to digest the proper nutrients that I need.

I was really pleased with how he analyzed my results and all the natural medication I can take to regulate the hormones in my body where it most needs it. He prescribed me a TON of natural meds to start taking immediately and I'll be taking them religiously for a month, when I'll go in for another follow up. If all the pills get to be too much, he highlighted some that I can stop taking for now. And I prepped myself to pay at least $1,000 for this visit, given how many meds I was ordering, but for curious minds, it all came out to $768, including the doctor's visit....a nice investment on my health :)

New Pics of My Footsie

So today I completed the blood work that my pain management doc requested. In total, 22 vials of blood. My little veins need some time to recover. LOL. And the final thing will be my 6-hour peeing session on Monday. Can't wait to hear the results from all these tests.

In the meantime, here are some new pics of my footsie, all healed but still swollen. I'm still taking it very easy because it's still hurting if I walk too much.

Two new feet

Two old feet

New Pain Management Doctor

Yesterday was a very hectic day in NYC. We started out going to see Dr. Feldman for a follow up appointment and thankfully everything is ok with my foot. The x-rays don't show anything unusual. He says I just overdid it and even though now I'm full weight-bearing and off the boot into regular shoes, he just asked that I take it easy for a few days so my foot can rest. Actually that's all I've done since Friday night. I didn't put my foot down on Saturday, Sunday or Monday and yesterday, after having to walk a bit, it kinda started hurting again towards the end of the day. Note to self: no more going to see 3 houses in one day for a little while.

Me and my pal, Dr. Feldman

We finished at 10:30am and my appointment with the new pain management doc wasn't until 1:30pm so I called their office and thankfully they could fit us in at 11:30. Well, we ended up being there for two and a half hours!!! When we first got there, I had to fill out my new patient forms. Then I got called in and had the doctor's undivided attention for about an hour. I must say that I really liked this guy...he mentioned new, innovative ideas that I had NEVER heard from any other doc in 6 years (unfortunately he spoke in scientific terms a lot so I don't remember too many specifics to list here). I faxed all my CMT medical papers in advance so he could become familiarized with it before I got there and he definitely knew what he was talking about, without being an expert on the subject. He is very familiar with neuropathies, genetic conditions, and treatment-less diseases.

Well, we already know CMT has no cure or treatment, so he doesn't focus on trying to treat CMT, he focuses instead on treating the patient, ME. But in the meantime, who knows if he can't help CMT, even a little bit? We went through my personal medical history and he thought of many possible scenarios. He ordered a LONG list of tests because he is going to examine all blood and urine test results to have a complete picture to know how to proceed. He was extremely thorough in his examination and because of our discussion I am really hopeful!!!! I strongly believe that this man is going to help me. I am not saying I believe he's going to fix all my problems. But I believe he is going to help me somehow, if not with the pain entirely, then help me have more energy, or sleep better, or not feel as exhausted and fatigued so easily. I'd like to point out that I am not naive about the possibilities, I just refuse to give up hope that one day I will live a better life.

I mentioned how horrible my thigh pain is and how I'm starting to wonder whether it's CMT related. One of the most interesting things he brought up was the fact that I'm taking so much Lyrica to help with my nerve pain that the medication could be creating these symptoms. He pulled out his little Rx book and the Lyrica description was extremely interesting and asked that you take follow up tests, which I have not done, and which thankfully were already on his long list of tests. So we are going to look closely at this Lyrica issue to see if they are related at all. Only thing is that my little sis who also has the thigh pain, does not take Lyrica. But also interesting is that this thigh pain has not been with me from the beginning, it's been about 2 years, which is the exact same amount of time I've been taking these meds!

After we were done, the nurse came in and took only some of the blood tests - which was 13 vials of blood!!! And I still need to go to a Quest lab near me and take the remainder because they forgot to tell me to fast before I came to the appointment. I also took a urine test there and have a much more complicated urine test to do at home, which I can only do after 7 days of not eating seafood and (sorry to divulge so much information but inquiring minds want to know) I'll be peeing for 6 hours on the 8th day with a combination of some meds in my system (FUN! lol).

After all these results come in, I'll schedule a follow up with him (and unfortunately have to take a morning off work already - sucks to do that when I'm just starting) where I will meet with him for another hour and review all the results and figure out the best plan of action for me: what supplements I should be taking, what I should be eating, what supplements I should stop taking. Then I will follow his advice for a month and then we'll meet again to see if we should adjust anything.

I should also say that I spent a small fortune on this appointment:
First visit: $400
Follow up visit: $275
Complicated at-home urine test: $160
Paying them to test my fatty acids: $257
Investing on myself and my health: PRICELESS
(and as my mom said, we happily pay more than that to go on a vacation or buying furniture, so I should just be happy that I have the money to invest on my health and well-being...GO MOM!!!)

PS: less than 2 weeks until I start my new job, I don't wanna say I'm scared, but I am a little! Oh man, it's been over a year. I know it will go great, it's just those first awkward moments and weeks of getting to know everyone and getting trained. But I'm sure it will all be forgotten when I get my first paycheck!

I'm in Pain...

I haven't really felt like writing these past couple of weeks because I have been pretty uncomfortable. I've been weaning off the pain meds carefully and a little more slowly than last time so I wouldn't suffer as much. And I finally called it quits on Saturday. Oh boy. What for? My entire body just aches, but mostly everything from my thighs down.

My legs have been hurting so much that I haven't been able to sleep (went to bed at 5am yesterday and only because of sheer exhaustion). Needless to say, it's been a rough few days. Yesterday, it definitely got the best of me and I got a good cry out of it. Then John was nice enough to take me to sushi, where we had an amazing dinner, and then we watched part of Harry Potter: Goblet of Fire (in preparation for Deathly Hallows on Friday, I can't wait!!!!). At the end of the night, I was really happy and not to mention, exhausted from lack of sleep, which trumped the thigh pain, so I was able to sleep at a decent time. But since I got a good night's sleep last night, it's probably too much to ask for two in a row, so I'm in pain and can't sleep because I'm so uncomfortable. Yes, I am tired but my legs just hurt too much. So I caved and just took half a pill, which will probably start working in 30-45 minutes and I'll be able to sleep then.

I cannot wait until Tuesday! First, I have my final surgeon's appointment at 10am. Then, I am going to a new pain management doc, and I am "trying" to be cautiously excited, but I think I'm not doing a good job. I am very hopeful that he will help, that he will shed some light on my situation. I'm starting to think that all this thigh pain isn't CMT afterall, none of my CMT buddies seem to have it, except for my sister. Could it be another complicatedly-named-genetic disorder we've never heard of?

This is the reason why I'm so hopeful: Pain Management Doc Helped Woman with Unthinkable Disease

So please wish me luck and say a little prayer as I gear up to meet this guy...may he have the right treatment for me and help me get over this pain...or even just help me get more energy to get through the day. I'll let you know how my appointment goes...and if he puts me on any crazy diet. (Please just don't ask me to eat bananas, celery, or olives.)

Just so this entry is not a total bummer, I'd like to point out totally unrelated positive news. My beloved orchid, a gift from a dear friend, is coming back to life. I thought I had lost her for good after she gave me 8 beautiful flowers this summer, but I came back home to see John took good care of her for me while I was gone and she'll be out to greet me again soon.

My beautiful orchid almost ready to come out. I can spot 4 future flowers :)

How she will look in a couple of weeks :)