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.

Yes, I'm Still Alive!

I can't believe it's been almost 3 months since I last wrote on my blog. I have had a million things to write about, but life kinda got in the way. I will keep this short so I don't bore you to death or quit before I can finish it...

I have had an insane summer...surgery in July, return to work after two weeks, then John and I were very blessed to find our perfect home and purchase it in the beginning of August, spent that month renovating it, moved in on the weekend that "Irene" decided to hit Connecticut, lost power for one week so we had to keep going back and forth to our empty apartment just to shower and use the fridge, and on top of all that, I have been planning 7 work events for September and October. If you got tired just reading this, imagine living it, with a condition that already exhausts you for doing the smallest tasks?

Oh and did I mention how I totally missed CMT Awareness Month? Really annoyed about that...was just too insane to think or write about it...

Unfortunately, my body couldn't take it anymore and crashed in a really bad way a little over two weeks ago and it was my worst experience with CMT to date...I seriously considered going to the hospital because even my strongest "back-up" pain pills did not work. Eventually, my doctor was able to help me figure out what medicine might work, but it's now almost 3 weeks later and I feel like I'm still recovering.

To make matters even more "interesting" my job decided that if I could no longer attend the events (I asked to not attend any event in the month of October for fear of the pain flaring up again), which are a major part of my job, that they might have to replace me!!!!! STUNNED SILENCE! Thankfully, that situation worked itself out for the best...they really love me there and did not want to see me go so they've offered me a part-time position where I get to leave work at 2:30pm everyday with a very reasonable package. Even though we don't understand His plans all the time, things seem to have a way of working themselves out sometimes...

My new schedule will begin this Monday and I CANNOT wait to get home early, get some rest, and then actually try to live a little. Hopefully, I'll be able to come back and write lots more because this is the condensed version...I have a lot more to say about everything...but let's wrap it up here and hopefully I'll return very shortly :)

Back to work!

It's time to go back to work and it feels as if I've been off for months...I went for my follow up on Thursday and thankfully things are looking good. My surgeon is really pleased with the surgery and the recovery has gone really well. Besides some swelling, my foot's doing great - I don't even need physical therapy. As you can see in the pic, the cut is a lot smaller than the others and thankfully it's off to the side of my foot so it doesn't hurt when I walk. Now we just have to wait for the swelling to go down and hope to see the results in about 4 to 6 weeks.

My biggest problem throughout recovery is the same as always, my leg pain. Unfortunately, the medicine that I was so excited about hasn't been working as well as it was before everything got messed up...I am hoping that going back to my routine, things will fall into place...what a sweet life it was when it worked!

On a completely unrelated note, my mom sent me this amazing video .... we should all strive to be a little more like this, help our brother/sister in need when they are down...click HERE to see.

My Journey Through Surgery

I met Tim like most other CMT'ers I've met - through the amazing world of the internet. Tim's story is actually very similar to mine, we're the same age, both have CMT Type 1A and he is getting ready to have his reconstructive foot surgery this week. He asked me to write an entry for his blog, which you can see below or by clicking here.

You can also check out his blog here: CMT creates: music. Good luck with your surgery Tim!!
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A year ago I set out on a journey, one that would be long and painful but one that should be very rewarding once I reached my destination. I am 29 years old and was diagnosed with CMT Type 1A in 2005. At that time, I met with a surgeon who could correct my insanely high arches, but there was a glitch...I wasn't ready! I wasn't even ready yet to know what CMT was. So I pushed it in a drawer and went on with my life. As time passed, my arches got even higher (my shoe sizes went from a size 6.5 to a 3!!) and the calluses in the balls of both my feet were worse. I had to go to the doctor on a monthly basis to have them shaved off and even then, I still hurt with every step I took. I also developed this terrible pressure pain on both thighs, my ability to walk or stand for long periods of time decreased, and I had no choice but to pull CMT out of that drawer and find the time to deal with it.

I did everything I could possibly do before having reconstructive surgery: physical therapy, acupuncture, several pairs of orthotics, expensive shoes, you name it. Life sometimes has a way of working itself out and I was moving to CT from NJ and had to quit my job. Since the job market isn't all that great and I didn't see any interesting jobs in my field (Marketing), I thought it would be a perfect opportunity to take time off and invest on my health by having two reconstructive surgeries, one on each foot.

I started my search for surgeons again around November 2009 and when I finally selected the best surgeon at the end of the year, he announced to me in January that he was retiring. I was frustrated and annoyed with him, but he promised that he would find me a great surgeon and that he would be there during both surgeries (and he kept his promise!). In February 2010, I met with Dr. Feldman, whom I immediately liked. He thought it would be a good idea to try an injection into my hips to see if it would help my thigh pain. Unfortunately the doctor that administered the injection hit a nerve and I was in so much pain that we couldn't go through with my March 17 surgery.

Finally on April 16, we were all set. No more delays. I had never been hospitalized or had any procedures done, so I was a bit anxious about diving into this unknown. On that day however, I was pretty calm. For me, the hardest part was making the decision. Once the decision was made, I was ready to go. I also prepared myself for the worst case scenario. I talked to several CMT patients who had undergone this surgery before me. I was ready for a year or longer in recovery. And most importantly, I was ready for the pain. The first night was extremely painful and difficult, there were a lot of tears. But I prepared for this journey with the support of family, friends, and loved ones, so I was not alone. Even though I live with my boyfriend, I prepared to spend about 2 months with my parents each time because they would be able to be with me almost all of the time. Believe it or not, time went a lot faster than I expected. Before I knew it, I could move again and I could start to step down with the walking boot. I returned home and started physical therapy. Within 3 months, my foot was no longer swollen (I mean, AT ALL). And almost immediately I could tell the difference between this new foot and the old foot, and was sure I had made the right decision.

Then, I started preparing myself for surgery #2, but this time, I felt more confident because I knew what to expect and the first surgery went so well. I knew what my timetable would be, how my body would react to the meds, I knew that even when time seemed to drag, that it would all fly by and I would be back to walking again. So we scheduled it for September 20. And just out of nowhere, 2 weeks before the big day, my surgeon's office called to move it to September 22, which wasn't a big deal but was kind of annoying. I point this out because life works in "mysterious" ways. One of the main things I have had with me through the process is faith - that everything would be ok. Six days before my surgery a recruiter reached out to me with a perfect job opportunity. And wouldn't you know that I interviewed on September 20 and 21, and actually landed the job!!!! They decided to wait for me for 2 and a half months while I recover!!! If this isn't a gift from above, I don't know what is.

Getting the job just made me want to get the process over with even more quickly. The first time around, I knew I would still go through a second surgery so I was pretty calm. But now that I have something to look forward to, I have been anxious for time to pass. It's now been 2 months since my second surgery and I've been moving around with the walking boot, soon I'll just be walking on my own.

I can't believe this year has gone by so quickly. I think it definitely has been my most trying year, by far. But as I get close to that finish line, I feel a sense of accomplishment. I really did what I set out to do. I feel that I am coming full circle. I won't say it's been an easy and rosy journey, it's been full of tears and many times over the summer, resentment that I could not go outside to enjoy my favorite season. But I'm almost done and I have learned so many lessons in life! Hopefully my new feet will be happier than my last ones and healthy for a long time to come!

Snow Days

It's been a while since I wrote on here, but I'm a working woman again so I've been a lot more tired and had a LOT less free time to write. But today is a snow day here again and I am hanging out in the comfort on my home. Thankfully we have been hit with 3 storms over the last couple of weeks and that has gotten me two free days off work and one early dismissal!!! Now, normally I would not be a fan of all this snow, but I can definitely use a day off at home during the week.

And it's also been just absolutely beautiful in town too

I actually have some great foot updates lately too...My right foot has finally turned the corner and has gotten so much better. The first couple of weeks at work were tough with the swelling, having to keep it elevated so much, not being able to move very well and also not being able to rest like I did with my left foot. About 2 weeks ago, I started to ditch the boot and crutches at work (I haven't used them at home in a while but I was being safe in the office) and also started to wear sneakers. This week I started to wear real shoes, pretty new shoes that I've been buying and the swelling is down considerably. It's such a huge relief. I am feeling so much better and stronger. I have even started to cook again and taken out all the "old lady" paraphernalia out of my bathroom.

Next week I'm going back to see Dr. Kessler for our follow up visit. While everything has gotten so much better, the pain in my thighs and my lack of energy have not changed but I am very hopeful that he's gonna have a trick up his sleeve. I'll write more after my visit with him. For now, I'm gonna go make a cup of hot chocolate and sit on the couch under the blankets.

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 :)

Sometimes You're Up and Sometimes You're Down....

This has been an amazing week, while also awful at the same time. We traveled to Newport, RI for the 4th of July with two of our favorite couples. It was just a 3-day getaway, where we saw beautiful places, laughed til we cried, and just had a fantastic time. We brought my wheelchair so I could be rolled around the entire time and not take away from our day trips. Thank God for John who pushed me all weekend, even getting calluses on his hands....I don't know what I would do without you. My foot felt great and I was able to walk around a little bit and get up to take pictures.

Unfortunately, as the rest of my body felt great and happy, my legs reminded me CMT doesn't take time off. It was difficult to fall asleep and I tossed and turned in bed all night, waking up in the morning crying. It felt like the pain in my thighs reached new heights, getting ready to test me again. Now that I have been used to my old friends, they've decided to up the ante and see how much more I can take. Thankful for the support, I got in the shower, took a pain med and went out. I wasn't about to let CMT ruin my fun getaway.

Thankfully the super-meds helped me throughout the rest of the weekend, but it left me very thoughtful and honestly, sad. This was such a simple trip where I got wheeled around 99% of the time and my thighs were so painful (on a scale of 1 to 10, I'd say 11), that it made me wonder if I'll be able to take some of my dream vacations. Will I ever be able to go to Italy and walk the cobblestone streets? What about Greece? All these beautiful European countries I want to see with my own eyes, where so much walking is involved. And obviously once you open the can of worms, only worms come out...what about having a family? Will I be able to keep up with a kid?

And if it wasn't for the thinking alone, but the pain has persisted, even after we came home. Sure, the first couple of days I blamed PMS (it normally gets worse with PMS)...but it's Friday and I'm still having trouble sleeping because my body is so uncomfortable. So it's just been a little bit of a sad week for me, not mostly sad because of the thinking, mostly sad because I am hurting and there's nothing I can do about it.

But I am not a sad person, so I am allowing myself these few days that I'm more emotional than usual (thanks to PMS) and just crying my tears and starting to feel better. And today I am back to me again. But I do think I need to adjust my thinking and prepare myself if this new pain decides to stay so I can just accept it and move on with my life.

Even through the bad, I am appreciating the good. This week I am walking with no help, I am just walking. The swelling has gone down a lot and my foot is looking a lot more normal. And I've tested the waters by taking a few steps barefoot on my hardwood floors and guess what? No callus pain on my left foot...which is so strange. I can't even remember the last time I had no pain when I stepped down. Step with the right foot, there are my calluses and they hurt. Step with the left...nothing! I guess this is what people with normal feet feel like all the time. I can't wait to have no callus pain at all.

Weeks 4 and 5: To be Honest, I've Been Better

The last 2 weeks have definitely been full of highs and lows for me. I'll start with the lows so I can end on a high note.

When I saw my surgeon over two weeks ago, he asked me to start weaning off the strong meds (narcotics) I've been taking since the surgery. So over the course of the last couple weeks, I have been reducing the medication by half and also spacing it out more. Finally, I felt good last Thursday and decided to stop taking it altogether. I was so proud of myself, my operated foot felt fine and so I went most of the day without taking anything.

However, my old pains had a different plan in mind. The medication was so strong that it made me forget how strong the pain in my legs really is when I am laying down for hours at a time. No medication or treatment I have ever tried has worked to calm them, except for this, which is clearly not the right solution. So that first night I battled with myself not to take anything and see how far it could go. Well, I ended up giving up at 2am and taking a full pill because I had already been brought down to tears and it was just ridiculous at that point. So the next day I tried spacing it out 12 hours - not good. The following day, 10 hours...didn't work.

On Sunday night, I talked with a friend from church and her husband, who is a doctor, who were kind enough to sit with me and try to figure out what kinds of treatment may be helpful for me. He was extremely resourceful and had lots of ideas that we could try and he was also going to speak to a pain specialist about my case. Thank you C & G!!!

On Monday, I went to see my regular podiatrist who has been so helpful and kind to me over the years. We talked about different options to try to ease the pain and I also talked to him about the ideas that we had discussed the night before with our friends. The first thing that was important for me to do was to increase my dosage of Lyrica to try to help with my nerve pain...since the surgery, I've had really bad nerve pain on my left foot. He also gave me two prescriptions for new pain meds that are very strong, try one for a week to see if it works, if not, then try the second.

I started with the new medication immediately. It did have its side effects so I spent most of Tuesday in the bathroom (I know this is TMI). However, I wish that was my biggest concern. As my stomach started to calm down towards the end of the day, the pain in both my legs and the nerve pain picked up and I couldn't sleep until 6am on Wednesday. It was one of the longest and most difficult nights of my life but I have my parents to thank for sitting with me, for crying with me, for taking turns with each other so the other could catch a few zzzz, after all they both had work the next day. I have to say, I hope to make them both very happy still...because the saddest thing is to watch your parents cry for you because they see you in pain. I can't promise it won't happen again, but I do hope to still give them many tears of joy.
Kal & Mica - didn't want you to worry so I didn't tell you today...but I'm better now so please don't worry.

Tonight the pain seems to be ok, not gone, but under control. I just can't sleep so I turned to writing on my blog again at an odd hour of the night....that's when the magic happens!!

As for the highs, it would seem that it's impossible to find them when the last two weeks have been about managing my pain, but I have been fortunate to go to church a few times, I can feel my upper body getting stronger and holding me up better, and I have gone home to spend a few days with my hunny.

At church, I got to see sooo many dear friends and hear some words of comfort and support from everyone. It was beautiful to see how many of our friends lined up to help bring my wheelchair (with me in it) up the stairs. I am really phobic of stairs so it wasn't the easiest thing for me to do, but I made it. I heard a lecture from a young woman my age whose life I could really relate to...and she chose to end her lecture by singing a song about how the pain will pass. I was already emotional enough from the outpouring of love and support, so it was no surprise that I let out my "bucket" of tears. I truly enjoy a good cry and I just felt so much lighter afterwards.

My mom drove me home to CT and I was able to spend a couple of days with John and also got to see so many of our friends there. It felt nice and odd to be home, since it had been almost a month that I'd been gone. I have to say, he's doing a great job keeping up the place on his own...I've taught him well :)

I knew this journey would be full of ups and downs and I was ready for them. Sure, it's not easy as I'm going through it, like a sleepless painful night. But today, that's a memory. At first, going up and down the stairs was so difficult and now I've actually done it twice in one day and even a few days in a row and no soreness. I know it will get easier as I go and hopefully I'll be out of the cast and able to move a little more so my legs won't be so sore. I am hopeful this new medication will work for me so that I will be able to keep taking it even after I'm healed to get some relief.

Today, I was so tired from not sleeping so a couple of friends came over to help. One of them (who is older than me) just recently went through her own medical scare and sudden surgery and in a moment of difficulty, she said she thought of me. That she had seen how strong I have been through my process that she had to try to be stronger through hers, that I was an example she wanted to follow. That was so sweet and nice to hear!

Good days give you happiness, bad days give you experience.
Both are essential in life.

I am keeping the faith....