Accepting Profound Peripheral Neuropathy
 

Hi NeuroTalk Support Group:

Four years ago I was diagnosed with profound peripheral neuropathy. I had so many problems going on I did not KNOW I had it until I begin piecing everything together.

Recently I was retested by an outstanding Duke neurologist. The tests results were the same as they were four years ago.

I said, 'well at least it hasn't gotten any worse." And he said "It cannot get worse. When the nerves make NO RESPONSE, they can't do worse, they can't make less than no response."

I was dumfounded. And I realized that I still have not accepted my neuropathy, after all these years. I still think I can overcome it, that I can somehow get better through my own efforts.

Of course, I haven't. And if I've been thinking I could do it, then I have been feeling like I have been failing to try hard enough.

Today is the first time I realized that if I go to the pool and exercise, and sometimes exercise in the gym on the machines, I'm doing the BEST I CAN.

I don't walk with a walker or with a cane. When I go out, I immediately sit down. I can't stand for any time, or walk any distance. At the mall, I wait while others shop. At museums I sit while others look at the art. I may visit a few galleries, but I sit down between each effort.

My only real outside shopping is at the grocery store, where I have the best walker in the world: the shopping cart!

If I do some grocery shopping, and go to a book group meeting, I have to rest for the entire day. I have other conditions: immune mediated. Both auto immune conditions and an immune deficiency. So I tire very easily, and of course any movement takes enormous effort and concentration.

I want to hear from others who have this condition. How do you manage the expectations of other people?

I also have many episodes of great fear, because the messages from my legs to my brain travel so fast, I am already afraid before I realize that I've just stepped on an acorn! And if someone comes up behind me when I'm standing, I am frightened, my perception is all scrambled. I cannot back up, walk around things, walk sideways, or turn quickly.

What do you do to make your life better? Should I be using a cane? It just seems like another thing to handle and trip over!

Hugs, Elaine

Yes, you should have a walking stick at least. Canes are difficult IMO.

The walking stick alerts others, and they will avoid you. Huffing and puffing some helps too. ;)

I am better in warmer weather, and terrible in cold weather. Seems the cold freezes my large muscles in the thighs and back.

While I don't have much pain from PN compared to my arthritis, but it is all very depressing. So I keep busy with things, and that helps.
I work here on the boards, I am clearing out my studio and getting ready for some major art work, I play with the cats, do some Ebay shopping for supplies and material for still lives... and just keep busy. I pace myself, move around the house, play a few Angry Birds, do the meals, etc. But hubby shops mostly now for food and other things. He is retiring next month, so he won't be griping so much I hope. There are still a very few shows I watch on TV, but I do go to bed early and rise early. That is my new normal. I've had to avoid most of the CNN news, and other downer type shows. Violence makes me ill and depressed, so there are not many TV shows I can enjoy anymore! :rolleyes:

When Feb rolls around I'll be starting my seeds for next summer, and that keeps me positive and occupied. I really don't socialize much anymore. My best friend is very busy at her job over the holidays, and we get together in January and springtime. Neither my hubby or I have any family left alive, except for our son, and he is mega busy with his job, etc. sooooo.... we are hermits of a sort. I rather enjoy the peace, compared to my nightmare noisy stressful job which I have escaped from!

It is difficult getting older, and trimming the life down to what you can handle. I totally sympathize. Keep positive, and do the best you can... baby yourself when necessary, and keep on truckin'.

As always, you have the best words, MrsD.

I did try very large doses of Methyl b-12, for a year and a half, every single day. No change did I notice, and no change showed up on the test in November.

I was really hopeful. But of course, it can only help certain types of neuropathy, and I don't know exactly what kind mine is! Not the kind that is helped by rather costly large doses of Methyl-B-12. Now I just take what I have as a supplement daily.

My neurologist really hopes that the copper supplement might make a difference, or finding Celiac's. He's seen people's lives revolutionized by discovering Celiac's Disease and then making the necessary dietary changes.

I'm rooting for him. I really am. I'm hopeful, but not relying on him to find a cause/cure.

I have family here, grandchildren, and a grand beagle. Friends, book groups, activities I enjoy. It's just that slightly nagging feeling that I should be out and about doing things. We worked for causes we support, and my husband did footwork, while I did phone bank work, which is equally important.

I'm finding ways to be myself. It's just that my husband is remodeling the entire house, keeping the yard, playing golf, running with the grandkids…..

My granddaughter can't comprehend that Grandpa is older than Grandma, since he is so active, and she can't do much!

Fortunately at 5'8" i don't get run down when I AM out and about, even without a walking stick.

Mostly it is just the misperceptions that always throw me, the seeing something, thinking I am going to step over it, and then NOT stepping over it. Message relayed, garbled, and not properly executed!

The other odd thing is that I look about 15 years younger than my age of 71. So even my doctors have to verbally remind themselves that they are dealing with a much older person. I look the picture of health, Mrs.D

Well, I guess that's better than looking as bad as I feel on occasion.

I start on IVIG next Thursday. I couldn't manage the subcutaneous infusions weekly, since I had a negative reaction every time. My immunologist is hoping that I'll just have one negative reaction a month, and then have some recovery time in between with IVIG. I liked the SubQ, don't mind the needles, and of course I can't go running around anyway, so I could sit easily while the infusion took a couple of hours.

I had retired early due to severe coronary artery disease, at 58. I didn't get any of the ensuing auto immune conditions until after that…..so I'm 'lucky'. I always say: My osteo arthritis is the most painful, my PN the most disabling, and my CAD will probably take me out when my time is up! The autoimmune conditions and the immune deficiency are just add ons!

Hugs, Elaine

Just saying that canes are difficult as well as a walking stick when you have a balance problem such as I do.

Yes, Kit, I think a walker would be better than a cane or a walking stick.

When the time comes, that's what I'll use. One with a seat, so I can sit anywhere!

Hugs, Elaine

Hi Elaine,
I am sorry you are dealing with this. I too have this and have had it since age 32. You asked about expectations. When I got neuropathy due to a combo of meds and hypothyroidism I was very sluggish and gained weight. I had no energy and i always had heaps of problems (emotional,anxiety) due to this situation and blamed the neuropathy for everything.

Then I went hyper (got off some meds) and went back to my pre-neuropathy weight and started exercising daily. My neuropathy was still there but my outlook and self esteem improved.

It took many years to get like this but I can say that neuropathy may not always get better, but by improving my overall fitness,weight,mindset I was able to cope alot better and also live a fuller life.

I am having a bad PN day today and am in pain myself and have been miserable and zapping all day at work. But I don't have that bottom out hopeless feeling anymore that I used to have because I know that life goes on, and I can make small improvements to keep my self esteem up and not let this illness get to me like it did in the past.

You mention swimming? Excellent exercise for PN, cardio, and keeping muscles toned and supple.

Aussie:)

Thanks so much for the reply, Aussie.

I cannot imagine dealing with this degree of disability so young. I know many do, and now that I have it myself, I KNOW it can be done.

One theory of the cause of my PN is the antibiotic I took for chronic Urinary Tract Infections which appeared suddenly in 2007. The antibiotic is well known for causing PN.

It turns out that I have Interstitial Cystitis, which is an inflammatory condition of the lining of the bladder and occurs in 50% of those with Sjogren's Syndrome, one of the auto immune conditions. AND I have Primary Immune Deficiency Disorder, and lack the antibodies to protect me from infection.

So my PN is the result of a 'perfect storm' of conditions. It sounds like that's what happened to you, too.

I know that I could work with this condition (I'm retired) but can't imagine doing anything that requires much walking about, that's for sure.

Fortunately, I have many tools to deal with depression and weight issues. So my weight is very good, and I get exercise, which is crucial in so many ways.

For example, I'm allergic to the only medication approved for my Interstitial Cystitis (and it isn't considered to be very effective anyway) and the only way I control the pain is by exercising. It really works, and is one motivation for me to get to the pool.

I can still drive, which is wonderful. If I couldn't, I would move to an assisted living environment with a heated indoor pool in the same building. I'm already thinking ahead as to how to keep up my spirits and my health as time goes by.

We do what we need to do, and I consider that we are fortunate that there are some activities and medications to make our lives easier.

Hugs, Elaine

Just a word about walking sticks. The kind found in outdoor stores like REI and eastern mountain sports, hiking poles, have excellent wrist loops. I use one when on level ground like a mall or sidewalk and two on trails. I would have fallen and twisted or broken an ankle many times without these poles. They are lighter than a cane and do not require a constant grip which is impossible for me since hands are affected. They are infinitely adjustable for height, most canes are not long enough for me.

I am unable to immediately know what position my legs are in, the poles help so much with those moments between standing up and regaining control.

Elaine, these are interesting discussions about accepting the disease. For myself, I am just thankful that I was only slightly affected when my children were young. I can easily accept this now that my youngest is 14. I am not sad about eventually needing a wheelchair. I think a lot depends on what kind of life you had before, how independent you were. My husband and I have been mutually dependent since we were 18, and that makes a big difference.

Hi Elaine,
I can understand because I have been in denial for 8 yrs. I have to let in the reality a little bit at a time. I was working at a large hosp/ital in the neurosciences dept as a RN. First it was just numness and tingling-then progressed to me walking like a drunk. I knew then I needed a walker-and still do. I'm curious if you can tell the name of your doc at Duke. I was worked up there-and the.y basically didn't know why or had no offer of any treatment. Then went to UNC and again very nice but nO answers. Did r/o Sjogren's.
Went to Emory. By this time no reflexes and no response on the EMG. I had low thyroid, stressful jOb (gave it up 6 months ofter this started.) poor diet and had been given Avelox 3 months before my first symptom. I finally saw another doc at EmOry-Jonathan Glass, top 10% in nation (according to USNews)in his speciality of neuropathy. He has seen this b4 and sai/d it was autoimmune all over my body and sai/d /it was /in th.e ganglions-no treatment. I've tried diets, supplements, lyrica(bad side effects) and have had small improvements, scary flare ups, but mainly am stable. It h.as only affected my sensory-no motor involvement. My loss of coordination and loss of position sense have been the worst part. And the pain. I use my eyes to ttell my feet where to go and my hands too. The doc just told me I have fast onset of glaucoma and macular degeneration!So you can make it. I don't need as much rest as I did at first. I keep trying to do things before I let someone else help me to keep up my strength. I hope I've helped a bit-I'll be
thinking of you and this site is wonderful support.

Interesting thoughts on walking sticks and canes. I use a cane (have for numerous years). After reading comments here, I may try a walking stick instead.

I have fallen even with the cane, but it's almost always due to lack of proprioception and not knowing where my feet. So I don't know if it would make a difference in falls, but it sounds like it might just be more comfortable and easy to use...particularly to help with general balance issues.

However, with my dysautonomia (particularly orthostatic hypotension) I am unable to maintain an upright position for a length of time...especially if standing still in a checkout line, etc. So I will be getting a scooter for use in public places where scooters are either not offered or just not available (being used by others or the oh, so common 'out of order' sign on them).

It's a difficult adjustment, but one that needs to be made and accepted.

It is a difficult adjustment. I delagate as much shopping as I can but when I have to do it wipes me out for the day. I feel stupid getting takeout when I have just filled the house with food because I am exhausted.
I am very unsure of my ability to drive one of those scooters. I am terrified of driving into someone.

Thank you
 

Your comment about the best walker in the world(the shopping cart) brought the best smile I have had in a month....The only time I don't fear shopping is behind a cart...I just hope I have your strength to fight this thing as you have GBU:winky::):)

A shopping cart is good and works great. One of those electric scooters at the store is very easy to handle. However, it is quite difficult when you go to reach for something. If it is real high or real low; especially high you have to get off of the scooter and reach it. Or ask someone if they would get the item for you. So you are constantly stretching and reaching. This not great for my back. :( The scooters are not as handy as they look. At least for me but not due to just running around the store with them. That is great. But if you can't walk at all then they are for you.

As far as a cane or a walking stick, the cane I have is far more comfortable as far as the handle goes. The problem with either the walking stick (and I've tried it and used to be able to handle it as well same with the cane) is due to my balance problem. Shall we say ordinary people who need a cane or a walking stick have all of their muscles to rely on good or not so good. A lot of CMTers have some muscles in their legs which are atrophied (diseased and dead). And you cannot build up dead muscles. A CMTer knows that. So there lies a big problem. If I had all of those muscles good or not so good as ordinary people have it would certainly help with using a cane or a walking stick or two. Otherwise, the two are about worthless and so an arm is pretty well needed when going out.

In the house furniture, doorways, walls, counters, and the like are a great help as just a touch will do the trick at this point. However, CMT progresses as it does and so things will change.

Hi Kitt, Steph, Susanne, en bloc, Janeverts, Aussi 99 and all who have posted!

Such a relief to know that others understand what we are experiencing.

I use all the furniture, walls, doors, etc. in the house to keep me going. Even at night, I can do pretty well, as long as I KNOW there is nothing on the floor, to trip me up.

Today I kept getting a cramp on the inside of my thigh when I was sitting in a meeting. I finally just had to stand up and keep stretching it.

When you do have a diagnosis of what is causing your PN, do you then have some idea of whether or not it will progress? How far it will go? I was afraid that mine was related to autoimmune conditions and might spread all over my body (once brain tumors and spine damage and MS were ruled out).

But since it hasn't really 'spread' in 4 years, I guess whatever it was just happened and that was it. Most likely an antibiotic I took for an extended time.

I've actually taken the same antibiotic since the PN was diagnosed, but only briefly. All the antibiotics for Urinary Tract Infections can cause PN (up to and including death) but I'm deathly afraid of UTIs since I once had a kidney infection with e-coli that was in my blood before it was found and stopped.

I have very poor immunity (almost none) and so fear infections of all kinds.

I start on IVIG on Thursday. I tried the subcutaneous infusions of IgG, but my weekly reactions to the IgG were too much to bear. So now we're switching to monthly IVIG. Being really miserable once a month may be more bearable than every week.

I also have a copper deficiency, which 'can cause neurological problems' and is so rare as to be almost unaddressed in research or in the literature. Even my neurologist was hard pressed to know how to address it once he found it.

Again, I don't see why a copper deficiency would cause profound PN and then stop progressing since the deficiency still exists and was just found two weeks ago.

I'm tired of having weird stuff that no one understands.

If my PN isn't going to progress, I can probably manage. But I would certainly live in an assisted living environment if I didn't have my husband to take care of the house and help me with big things.

I have severe arthritis in my hands and can't manage heavy items, or picking up things very well. And of course, I can't walk anywhere carrying anything much.

I'm finding I accept this a bit better. But today, when I drove to the meeting, as I got out of the car and stood up, I realized AGAIN that I have to move very very slowly from sitting to standing, and then wait to see if I'm going to be dizzy (sometimes I am).

Once I started walking and then realized that I was going to faint. I fainted just inside the door of a restaurant, shocking myself, my friend next to me, and my husband who came rushing in behind us.

I don't have the dizziness when standing up all of the time, like so many do, however.

Susanne, you should try a scooter at one of the supermarkets or stores, just to see if you CAN drive one. Most people do notice the scooters, and steer clear, and they beep when you back them up, I think.

When I watch people with scooters shopping, most of the time they have someone with them, to reach for things, etc. I think the idea is just to be able to go out and see things and make some choices.

I am so used to shopping on line now, I'd be happy to do my grocery shopping that way, as long as I could get some 'good buys'!

I have hearing loss, and that adds to my instability, especially in the shower. If I close my eyes to rinse my hair, I no longer have my eyes, ears, or legs to give me a sense of position. I fell backwards out of the shower at the gym TWICE (before I knew I had PN) until I learned to stand with my back to the wall in the shower!

Janeverts, I'm so sorry to hear that you have vision problems! It doesn't seem fair that some of us get 'one of each' at the 'problem buffet' of life! Have you tried Cymbalta for the pain of your sensory neuropathy?

I take Cymbalta which helps a great deal. And Aleve (Naproxen Sodium). I cannot take any codeine type products as I have an immune response that is very unpleasant: frantic itching, pain, fatigue and depression.

My neurologist at Duke is Dr. Peterson (Paul), Immunologist is Dr. Lugar (Patricia) and Rheumatologist is Dr. Mitchell (Kate). My HUSBAND is a retired research Immunologist who did organ transplantation research and taught at a medical school in Boston for 25 years. He is as puzzled by my Primary Immune Deficiency Disorder, Neuropathy, and everything else, as I am.

But he does understand how complex our systems are, and how little doctors and medical science really know about how things work.

we are very very far from being able to cure or stop many of the conditions that make our lives miserable.

Well, life has no guarantees, for sure. And I've had many wonderful experiences. My heart breaks for the very young who have to spend their entire lives with serious disabilities. And yet I know that we can find joy and solace in the simplest things, that so much depends on letting go of expectations and accepting what is.

Today the sun is shining. And my house is reasonably clean and tidy! What more could I ask?

Hugs, elaine

how did the doctor at emery determine that your pn was in the autonomic ganglia? is there specific testing for this? was it based on symptoms?

Online shopping is a huge blessing. Our Christmases are large, extravagant, and expensive and I never had to leave the house. Thank you Amazon! (And Lego, Williams Sonoma, Macy's, and even Petco!)
I would also be unable to live by myself, Elaine, especially since CMT is progressive. My husband simply has to outlive me, although I could possibly live with one of the children, or have them live here. If some girls don't appear to take my sons off my hands I am sure one or more will still be home. I wish I could order a daughter-in-law online!
I have had to get up and pace in the back of church when the tension in my legs just got to be too much. At Latin Mass you kneel though most of it and it is somewhat humiliating to have to sit back when much older people are kneeling but I learned my lesson about that. My legs can go so numb I can't walk at all afterwards.
I try not to think about the future more than I need to for practical purposes. We did have the floors leveled, the porch door changed to easier opening and wheelchair width, and the washer and dryer brought up from the basement. For now I can make it up the stairs to bed, but it is difficult.

I hope you see some improvements from the treatments, Elaine.

When we bought this house three years ago, we chose it because it has 1) a first floor master, 2) the washer and dryer next to that bedroom.

It does have a few steps up into the house from the garage or front door.

And I don't think the doors/halls/bathrooms are wheel chair accessible.

But we can modify that if we have to. I'm SO GLAD I don't have to go up and down stairs for my bedroom or the washer and dryer.

Hugs, Elaine.

I was dumfounded. And I realized that I still have not accepted my neuropathy, after all these years. I still think I can overcome it, that I can somehow get better through my own efforts.

I was just thinking this same thing to myself yesterday. I do have a therapist that works with me and I was thinking I need to talk to her about this. I keep telling myself I'll wake up one day and I'll be better. I'll go back to the person I was before. A very active woman, working as a nurse, exercising 5-6 times a week for 2 hours or so. Also, striving to take on the next challenge in my life. Zip lining, propelling, ready to try anything at least once.

Now I feel like what I have left in life is my family and friends. No job, less money, no exercise. No striving. Nothing new in my life except the decline of my body with this disease. More weakness, muscle pain and burning pain then before. I've been dealing with this for 8 years.I have full body SFN and most doctors say Sjogren's also. My bloodwork comes back normal most of the time. All types of specialists, Rx's, etc. I'm getting tired of it all. I go to bed tired and wake up tired. I'm taking most of the supplements that we talk about on here, Cymbalta, Synthyroid and Tramadol. Recently, the pain has gotten so bad I have added at least 1 Percocet per day. Only 5mg it seems to really help me.

Then I beat myself up. I tell myself you can do better than this. Just walk on the treadmill and do some light upper body lifting. I try that and then I'm up all night in severe pain.
I tell myself don't take the meds. They aren't good for you, but then I shudder to think what the pain would be like without them. Then I tell myself I must be weak if I need to take percocets and that I'm probably going to end up addicted to them. Then I tell myself that if I where weak I'd be in bed everyday with all the pain I'm in. I hate the people who say your mind can heal anything. Because if that is so why can't I do it. Why can't I get better. Why can't the doctors come to one conclusion? I have begun to second guess everything I do and take.

My daughter says I analyze everything and need to stop it. I guess she is right. Somedays I feel heartbroken. As you can see today is one of those days. I don't usually bring this here. I mostly cry to my husband. Thank God for him.

Well, hopefully tomorrow will be a better day. That's how it usually goes for me up and down. Thank goodness I still do have more good days.

Sorry for the long post!

Dear hopeful, the long post was marvelous!

I did see one thing interesting, you worked as a nurse. You ARE a nurse, and your entire purpose in life has been to help others.

My husband has 9 sisters, and six are nurses. I have found that nurses do not accept their own illnesses/conditions well at all. Nor those of their own family.

Illness and conditions are for other people.

No one accepts chronic illness easily, but I think that people with a strong bent towards independence and helping others have the hardest time. Somewhere inside we secretly or not so secretly feel that we can 'make things happen.'

The biggest hindrance to our peaceful acceptance of life as it IS, is our own STRONG WILL. Our strong wills have gotten us so far in life, but now they are making us crazy.

We need to use our strong wills in places they will help, but we need to seriously sit them down and have a long talk about SHUTTING UP now and then.

I'm glad to see that you are taking medications that will help you, hopeful. They aren't supplements, they are essential medications to address your conditions.

I became allergic to Tramadol, and to all codeine products. So I must address pain with Cymbalta and Aleve, and occasionally Tylenol. It isn't easy, is it?

I have learned relaxation and meditation techniques for pain management, as well. And ABOVE ALL, I now focus on accepting myself, loving myself and my body which is doing the best it can.

This is a great book: How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers Toni Bernhard

It isn't religious or preachy, just a very good set of principles for self understanding and acceptance.

Our conditions are NOT moral issues, hopeful. They are what they ARE. We didn't ask for them, we are more than our conditions, and we can transcend them best with acceptance.

Hugs, Elaine

The Toni Bernhard book is wonderful! So nice to hear of someone else who has found it helpful. I think she went off the rails in one chapter, but the rest of the book was fantastic.

Hopeful, I am on 30 mg. MS Contin 3 times a day, with 7.5 mg. Percocet for breakthrough pain, usually brought on by car rides. At 6'2" there is no way for my legs not to hurt in a car. Without it I would be a miserable shivering mess on the sofa, under blankets. My legs hurt like there are ice cold iron rods running the length of them, and my arms are always sore, with intermittent sharp pains. I also have arthritis in my spine which flares occasionally. The arthritis in my hands, knees, hips, and feet is a constant along with advanced LFN/SFN from the CMT.
But with the meds, which would have a lot of people shaking their heads, I can cook for my household of five, bake dozens of Christmas cookies, wrap presents, sit at the sewing machine for an hour or so, and do some of my own shopping. I can take myself to the doctor and the store. My driving is limited because my leg goes numb after 15 minutes or so and I learned to drive late in life (37), so have never done highway driving, but the meds don't seem to affect me. We play strategy games regularly and I teach a small high school lit class for homeschoolers. Everyone is supposed to keep an eye on me for any mental deterioration from the meds, but I only appear to have positive responses to them. I think it is a disgrace that we cannot more easily separate opioid use that results in improved functioning from that which results in impaired functioning, but it should be that simple. Do not let anything that helps you to have a better quality of life make you feel guilty. There is suffering enough, even with a fair level of pain relief. Untreated chronic pain is a disease in itself and can cause heart problems, depression, and even suicide. Each of us is entitled to enough pain relief to be as active as our disease allows, or we will be unable to think about anything other than the pain.

Going to Emory Neuropathy Dept in Atl in March
 

My neuro is pretty much useless..........he lowered my gabapentin from 2700 a day to 1800 a day but didn't say what he had in mind for treatment. He doesn't give me my pain meds or Xanax....I get them from my PCP because SHE does understand the pain. My new oncologist made my appoint at Emory. Said that was going to be my best bet for help. I'm hopeful they can help me. The only treatment I've had so far is the gabapentin.

This week has been the worst....had a mammogram on Mon that I drove myself to (I usually don't drive unless absolutely necessary or ride if I can help it) then Tues my daughter in law drove me to neuro.....we then went to a dollar store. I just so bad wanted to shop. That put me in bed all day Wed and most of yesterday. I hate this. Hate it....hate it. I'm tired, scared and have no idea what the future holds for me with the SFN. It's moving up my legs and now my hands, right arm and part of my left arm are aching....a deep aching. The only relief I've gotten this week was from taking 1/2 a vicodin and 1/2 a Xanax at the same time. Sometimes that didn't even help. I've only been dealing with this since May. Diabetic/chemo related.

Wish I could say writing this made me feel better but it hasn't. For a person with a usual sunny disposition I'm broken....

Thanks for listening.....Debi

Debi, I am so sorry. You are always so cheerful. Many of us here have been abandoned by our neurologists- they hate prescribing pain medicine and realistically they aren't going to see us often enough to do it. They also tend to feel that since there isn't any treatment they can offer they are wasting their time and our money. If your PCP is willing to work with you on adjusting your medication for maximum relief that is probably the best way to go. Given your other issues there should be no question of taking your complaints seriously.

The future. It is easy to say try to live in the present and don't worry about what you can't control, but it is only human to think about what will happen if things continue the way they are, or get worse. You have been hit pretty hard with this, and your frustration level must be running very high. This has been sudden, which is much harder to adapt to than a gradual loss of ability like mine. Your experience with trying to do a little shopping raises the question- overall is it worth it to you to be more active, get out a little, shop, go to dinner, even if it means paying for it tomorrow, or do you feel better conserving your energy and keeping your days quiet and consistent? Only you can answer that.

I wanted to help a friend make pajamas for her children. I knew it would leave me pretty exhausted and sore, and it did, but I felt great about having done it. I would not have felt the same way about housecleaning, though that will have to be tackled, with a lot of help, in the next few days.

Honestly I think you may need something stronger, or more consistent if the pain continues to limit you this much. For something to think about with doctors there is this

http://www.healthcentral.com/chronic...hronic-illness

For thinking about conserving energy there is the ubiquitous spoon theory, which really helped my husband understand-

http://www.butyoudontlooksick.com/na...poonTheory.pdf

Please keep venting here, we care about you, you're so sweet! And take care of yourself. It is easy to forget how much extra work this time of year makes, even when you think you are taking it easy.
Bless you,
Susanne

Hi Elaine,
Your words hit the nail right on the head. I have always said that nurses make terrible patients. We are so use to taking care of others but tend not to be able to accept help when it is our turn. We do secretly think we can make things happen. Fix the wrongs.

I have that book. It is very good. I also meditate but I have really slowed down in that practice.

I am sorry that you can't take most of the medications available for pain. That must be difficult for you.

I need to find a way to accept this disease, plus I have to learn how to accept that I can't be in the shape I use to be in. I have never been good at loving & accepting myself.

At least I'm 55 years old. My daughter's friend is going through all something similar to and is 37. She has 3 small children. Now that is a shame.

Thanks so much for helping me to feel a little better.:hug:

Hi Susanne,
Thanks for the reply. I actually read this and went and took my medication. The Percocet really does help me. The pain goes down a lot after I take it. You are right I do feel guilty about it. I had a sister that got addicted to painkillers and alcohol. She had a severe case of RA. She eventually took her own life. However, when I look back to years ago she had an addictive personality. (Don't know if that is the right way to put it). It scares me!

My family keeps telling me that I'm not like that and I know they are right. I'm going to try to take the meds when I need them and stop worrying about it. I need to be able to do things.

I may have already asked you this but what test did you have done to get diagnosed with CMT. Do u know if the 23 and me test for it?

Thanks again for your help:hug:

Hi Hopeful, Just answering your question to Susanne. No, 23 and me never had a test for CMT when I checked. We have to have DNA blood testing thru Athena Diagnostics for example that could help those of us who have one of some 50 types of CMT and there is no end in site for that #. That was as of 2008. However, a lot of us CMTers have the more common types of CMT. Also, certain types of CMT (such as CMT1 or CMT2) can be diagnosed with EMG/NCV testing, family history, etc.

As of now, when I checked, 23 and me has suspended their genetic testing.

https://www.23andme.com/ancestry-onl...JJq2_WuB7DOlE=

My diagnosis was made based on examination, abnormal EMG/NCS, skin biopsy showing no small nerve fibers, and markers like childhood clumsiness, poor coordination, high arches, high stepping gait, absent reflexes and complete loss of sensation to the knees. Family history is prominent but shadowy, a dead end due to illegitimacy but lots of indications of severe CMT. Second opinion at Johns Hopkins, neuro offered more testing including full Athena panel but said it was unlikely to make any difference since there is no treatment for any type of CMT. I figured why bother? I received a very sincere "good-bye and good luck" from the doctor there.

You are not your sister, but I can see how an experience like that in your family would worry you. As long as your close friends and family see you functioning well you are unlikely to develop a problem. Under treated pain is dangerous too. And yes you are right that addictive personality types play a big part in this. It is why doctors are very reluctant to prescribe pain medicine even for recovered alcoholics.

I read the Spoon Theory from start to finish. It made me close to tears. It describes how we all deal on a daily basis. I say that I accept my condition but in my hearts of heart, I know that I have not. I know that total acceptance is crucial in taking the steps to manage chronic conditions. Just when I though I have accepted, the thought of me being healthy --- making major decisions for a multinational company, traveling from 1 country to another, planning for more productive years and not worrying of simple daily activities --- will take me few steps back. I had accepted though that i could no longer wear stiletto shoes, which I love too much; i could no longer wear tight jeans or signature dresses because it bothers my skin, but mostly, I feel my medical conditions have robbed me of the person i used to be or the kind of person I still want to be. Retirement from work has never been in my plans, but it happened. Now, the pain loses my interest to dress up. How can you be encouraged to dress well when your skin is firing up with the touch of the cloth and you cannot stand too long or you cannot breath properly? What upsets me is the fact that why is there no medication to this pain or why cant there be no cause to it???

I am trying not to air out my sentiments here. I keep my emotions within the corners of our home but holidays makes me more frustrated for not being able to do more. Its going to be my birthday on Christmas day and i pray everyday that He gives me the gift of healing. Being Catholic, I hold on to my faith and so far, its the one that keeps me going and of course my husband as well.

I have seen and read the Spoon Theory years ago. It is so true. Thanks.

Wow, I love this forum, and all the posts. I have so much to read each time I log in.

PLEASE keep posting. The best thing we can do for ourselves and for others is to share honestly down to the smallest details. Something that we discuss may really hit home for another person, and expand the horizon from that horrible huge cloud of pain and suffering, out to others and some rays of hope!

Now I'm going to do some research on SFN, for example, to learn more about what you're experiencing, and also CMT.

I managed to be pretty productive until age 57. And then what caused me to retired was a diagnosis of a 95% blocked coronary artery called "The Widow Maker'. I did NOT have a heart attack, the three blocked arteries were opened and two were stented. But I also had 6 trips into the OR in 10 months, for other issues that year.

So I decided to retire early, and spend more time with my grandchildren. And I was very active with them, but slowing down, and then my autoimmune conditions kicked in, my chronic infections, anemia, then profound PN, and finally a diagnosis of Primary Immune Deficiency Disorder. My body does not make enough of the normal antibodies to protect me. I have to have transfusions of antibodies from other people, every month. Now I have been found to have a rare, bizarre copper deficiency. My neurologist has NO IDEA what is causing it or really whether treatment will help.

The two major effects of copper deficiency are hematological (like my anemia) and neurological (like my PN).

I live in doctors' offices, I have blood tests every time I turn around. My folder is three inches thick (honestly) in my neurologist's office. My condition list is a full page long, and the medications and supplements list is more than a page long.

I didn't sign up for this. But it is what it IS.

SOME THOUGHTS ON PAIN MEDICATIONS:

1. Prescription Pain medications are the most abused substance in the USA.

2. Pain medications will relieve pain, but over time they lose their effectiveness.

3. Increasing the dosage may help, but eventually all pain medications will cease to really work.

4. In fact, when you stop pain medications after long usage, there is REBOUND PAIN. You have more pain than you had before you started.

5. These facts are very painful, because Pain has no before or after, only NOW. Pain is terrifying and life destroying. I know, as I"m sure you all know.

6. Medical Science does NOT have a very large tool bag for pain. If you have tried things from this list:
TENS
ICE
HEAT
PATCHES
CREAMS
Anti seizure Drugs (for pain)
Anti Depressants (like Cymbalta, on label for pain)
NSAID
Tylenol
Tramadol and analogs
Codeine and analogs (things like Dilauded, etc are included)
Prednisone

You have tried almost everything there is.

Have I left something out? Ii've tried all of the above.

What works for me: Cymbalta and Aleve, (Tylenol once in a while) exercise, meditation and relaxation. Heat for my Degenerative Disc Disease.

Now exercise with PN means one of two things: mild aerobics in a warm pool, and using the variable resistance machines at the health club. The ones where you can sit and move various parts of your body.

One of my conditions cannot be treated at all, causes frequent nagging pain, and I CAN CONTROL THAT PAIN with exercise. Isn't that amazing? I mean I found it out by accident, paddling around with my granddaughter at the pool one summer.
Now it is my 'go to' and I know if that nagging pain starts, I must get to the pool.

Please keep posting for me to read. I don't get out much, and you light up my life!

Hugs, elaine

Charcot-Marie-Tooth Syndrome
 

Charcot-Marie-Tooth Syndrome (CMT) is also known as Hereditary Motor Sensory Neuropathy (HMSN). CMT has also been known as Peroneal Muscle Atrophy. It affects about one in 2,500 people. CMT is the most common "inherited" neuropathy. CMT can vary greatly even within the same family. If you have CMT, symptoms can become evident when you are young, old, or in-between. Or symptoms might never be that evident but you still can pass it on. CMT is misdiagnosed even today as polio, Fredricks's Ataxia, etc.

CMT is progressive (usually slowly) causing deterioration of peripheral nerves that control sensory information and muscle function of the foot/lower leg and hand/forearm. However, not every CMTer has their hands affected or vise versa. Sometimes it is surgically treated. However, brace first and then perhaps surgery depending on the problem.

It may become worse if certain neurotoxic drugs are taken. It causes foot drop walking gait, foot bone abnormalities, high arches and hammer toes. However, some people have flat feet or even normal arches and not all have hammer toes. There are problems with balance, problems with hand function, there can be lower leg and forearm muscle cramping, loss of normal reflexes, and sometime scoliosis (curvature of the spine).

There is no treatment at this time. No magic bullet; supplements, pills, etc. Physical therapy, occupational therapy, and moderate physical activity can be beneficial. If you overdo you can exacerbate CMT. No pain, no gain is not the way to go with CMT.

CMT is usually inherited in an autosomal dominant pattern, which means if one parent has CMT, there is a 50% chance of passing it on to each child. Depending on the type of CMT - and there are many - it is inherited in other ways.

CMT is a complicated syndrome. Much research is being done. It is under the umbrella, as they say, of the MDA along with about 40 other orphan diseases.

Reputable sites are always a must when trying to learn about CMT and then one will never understand it all anyway.

Jean-Martin Charcot, the Father of Neurology is a fascinating person to research. There is much to learn about him.

Hi Susanne & Kitt,
Thanks for your answers. I probably don't have CMT. My EMG's were normal. I was just wondering because I have extremely high arches. It also seems my muscles in my legs are getting weaker and weaker. My skin biopsy was positive for SFN.
I'm just always trying to figure out what is going on.
Thanks again!

The weakness in the legs is suspicious of large nerve involvements. The nerves die back and the muscle follows. I cannot move my toes or the front of my feet and i have limited flex in my ankles, trying results in muscle spasms. My upper leg muscles are weakening, I need help getting out of chairs and up steps, it seems like I've lost the lifting muscles in my thighs in the past six months. CMT can progress to wheelchair, from my reading on other forums it seems like many people have more severe symptoms than the web info cut and pasted from the same sources would seem to indicate. The Mayo clinic site is particularly dismissive of the severity of the disease.

I always like to put it out there as a possible cause as personally I believe many idiopathic cases are actually CMT, and doctors jut have little experience with it. It does give closure, what it doesn't give is hope.

How long ago was your EMG? A lot depends on the ability of the doctor or technician conducting the test.

I completely understand so much of this, especially about not getting dressed up. I have always been a stay at home mom. I was a brilliant student, national merit scholar, recruited by West Point and the ivy league, but I never had the ambition for a career and coming from dysfunctional backgrounds, when my husband and I met at 17 in honors class freshmen year all we both wanted was a real family. I put all my skills into homemaking and homeschooling and was quite successful but I did not have to give up a satisfying and prestigious career because of this disease. I can imagine that would be much more difficult. My husband has a high profile, executive job, although he works at home, and while he has never been really driven, rather viewing it as a means to an end, there are a hundred social contacts he enjoys through work and he is like a little kid this time of year when the vendors send their Christmas baskets. He would deny it but he would miss the socialization and the importance.

I do enjoy dressing up, and I like to look as nice as possible. I just ventured for the first time into the hair coloring side of the salon, I have black hair and liked the silver coming in but wanted something totally offbeat, so I had purple streaks put in, very subtly, two underneath the top layer. The stylist wanted to put a dark chestnut rinse overall just for shine and now that the grays are covered I have to admit I like it very much. The purple makes me smile when I look in the mirror, it isn't terribly obvious, but I love it. My youngest son was disappointed, he expected a lot more purple!
I need things to make me smile. There are days I very carefully plan when and how I am going to take a shower, lie down for a while, then get dressed. There are days I skip the whole thing because I have other things to do. Too few spoons to be clean AND bake or shop. Putting on stockings requires a nice long rest and my hands won't be able to do that much longer. Wearing jeans and going somewhere in the car uses up breakthrough medicine. I wear long skirts and knee socks more often because so many pants aggravate the burning in my thighs. I do not like to leave the house without makeup so that is another spoon gone. I never could wear heels, my balance and gait would not allow that even when I ws a teen, but I love nice shoes and all of mine have to be orthopedic because I need maximum stability. I bought a pair of low pumps and wore them once for my daughter's wedding in 2011. I served all the food, it was here at our house, and I got through the day but I can't walk in them now.

I am beginning to feel that it isn't worth it to buy new clothes or accessories, that I rarely have the energy or reason to dress up, and that I walk funny and use a cane anyway so why bother?

The other major loss for me is the planning of large projects. I used to love to plan my projects, quilts, embroideries, laces, sweaters, gather my materials, daydream over my patterns. Now that it is obvious that I can only complete small, finite things like socks and scarves and baby things I really miss the idea that I could do anything. I thought once the children were grown lace tablecloths, heirloom quilts, and cross stitch masterpieces would flow through my fingers, but i work more slowly now and only have a few hours in the afternoon and evening when my hands aren't too numb to hold a needle.

Sorry, this has turned into a blog post...

Well, I have so much to learn about:

SFN
LFN
CMT

I have some idea of autonomic neuropathy. I know I have some features of it, mostly bladder, some bowel, and the Orthostatic Hypotension. Probably others.

One of the hardest things for me is that none of these conditions really has direct treatments, AND most doctors don't understand them well.

The ordinary person hasn't a clue. And really doesn't want to learn all that much about most illnesses.

I have to accept that, even when they ask and look interested, I can see their eyes glaze over when I try to explain. And the questions they ask tell me that understanding is so far away from possible that it wouldn't be fair to most people to try to clear up their confusion.

My SIL, a nurse, cannot understand WHY I would take a treatment for my Immune Deficiency that causes unpleasant side effects. 'Why not just forget about it? Just stop doing it.'

I have to work harder at letting go of my resentment that she said this. It isn't my problem, is it? If I worried about what others were thinking and saying about me I would be one unhappy camper most of the time!

So I will look up SFN, LFN and more on CMT. It is interesting that when someone identifies a condition, particularly genetic, that it gets their names! How many think some one with CMT has a dental disorder?

Hugs, Elaine

I've read about CMT a bit. Of course it's very complicated, but it doesn't seem like there are many treatments for the condition.

Did any of you have earlier family members with this diagnosis? Or that you think may have had this diagnosis but it was missed?

I know that Sjogren's Syndrome sometimes occurs in family members, and then people are alerted to look for it a bit earlier than they might have otherwise been.

I had never even heard of it, or of Primary Immune Deficiency Disorder, when they were diagnosed.

So many of us are wandering in the dark for so long until we find the right doctors and the right tests. And then there is a 'bit more light' but so often we have to provide our own light to each other.

Hugs, elaine

As I stated in my other post about Charcot-Marie-Tooth Syndrome (CMT)- there is no cure/treatment at this time. You deal with the symptoms as they come along. There are no supplements, pills, etc. - no magic bullet. Much research is being done concerning CMT as I stated. A person who suspects CMT needs to be seeing a neurologist who knows CMT. They are out there. You just have to find them. CMT is complicated because there are so very many types of it. There can be hearing loss, phrenic nerve (diaphragm weakness), vocal cord involvement all depending on the type of CMT you have.

CMT was first given a name in 1886 by Jean-Martin Charcot. His colleagues were Pierre Marie and Howard Henry Tooth. Jean-Martin Charcot is known as the Father of Neurology. He also is responsible for giving a name to MS, ALS, Charcot's Foot (which is not related to CMT), and others. He was the first to describe these. One of his students was Sigmund Freud. Jean-Martin Charcot truly was a gifted man.

CMT has been in my family forever. I can trace it way back thru the generations. There is no doubt about it or any of my family members being misdiagnosed. If you know CMT you can spot it in a minute. I have known about CMT since I was five (5) years old and that's a long time ago. There were no symptoms that I had for many, many years. And I did not need a neurologist or EMG/NCV testing to tell me what I was experiencing. I knew. But I saw the doctor and did the testing anyway. Myself and some of my fellow CMTers in my area have had more than one expert neurologist who knows CMT at our CMT support group meetings. Much was explained, for those who didn't know, and much other information has been given.

Hope you find the answer to your problems.

Hi, there are plenty of people in the general public who have high arches, flat feet, one of each, normal arches. So that alone does not say that you have a type of CMT. The fact that your EMG/NCV testing was normal tells me that you do not have CMT1 or CMT2. In CMT type 1, nerve conduction speed is slowed. In CMT type 2, the nerve conduction speed is usually normal or mildly slowed but the responses to the stimulus are small. If you have a muscle disease, the nerve conduction speed remains normal. The second part of the test determines the ability of your muscles to respond to electrical impulses supplied by the nerves.

I hope you find the answer. Take care.

I never say Charcot Marie Tooth for that reason, Elaine, it does sound dental! I always say hereditary neuropathy. No one gets that either. I completely missed the family connection because my mom was committing adultery and my dad wasn't my biological father. I did know my bio father, although he never acknowledged the relationship, and I knew that one of his legitimate daughters wore leg braces from childhood and he self medicated with alcohol and had trouble with his legs and hands and getting up from chairs, etc. I had gotten so used to ignoring that as part of my family history I didn't tell the neurologist about it until the diagnosis had been made. It only confirmed it.

My eldest son has it and is already having trouble walking and playing the piano at 29. He was an accomplished pianist but his hands go numb after a few minutes.My daughter recently had a normal EMG thankfully, and my second son has a few symptoms, mostly in his hands. Our two youngest are adopted.

Hi Susanne,

I say it. But I explain that CMT is named after the three doctors who gave it a name. I also tell them that it is also called Hereditary Motor Sensory Neuropathy (HMSN). If eyes glaze over I simply leave it at that but I make certain that they know it is hereditary and not auto immune. CMT is one of the most common "inherited" neurological disorders.

Interesting, Kitt. I don't know that 'not autoimmune' makes much difference with most people. But maybe it does.

Perhaps "genetic' is more understandable than 'autoimmune'. Many people think that autoimmune means "all in your mind!". Well maybe not Lupus or RA, since I think they have higher visibility perhaps?

I just gave up on explaining, except when I think I'm talking to some one who might really understand. But when I has come to my own family, especially the medical side of the family, the understanding seems even less!

On the whole, since doctors often don't understand, I guess we can't expect the average person to 'get it' either.

And honestly, on some of my forums i hear the most...oh dear I was going to write 'nonsense'. I try not to be judgmental. But today on one forum a poster was rambling on and on about how 'bad and evil' adrenaline is. First, it is usually called epinephrine in the medical community and second is it vital to the functioning of our body.

I tried to explain what epinephrine (adrenaline) does, and she said, "I think you're talking about Dopamine". I should have given up at that point.

And she has a condition. It turns out that having a condition doesn't give you any greater brain power or common sense. So I do understand what doctors often have to deal with.

I have learned so much and found so many ways to deal with my conditions on the forums.

I am not finding ways to deal with my neuropathy so much as ways to accept it.

Today I was reading some research done in the 80's which established that when you have peripheral neuropathy you cannot compensate in your BRAIN for the nerve damage in your legs. Of course we know that now, and those of us who have it surely know it. AND YET, I have people who watch me walk tell me I just need to exercise more and build up my strength!

As I said, when I began to have nerve damage, I realized how insensitive I had been to those who have had strokes and other sorts of nerve damage. I thought they just had to try harder.

Maybe I would be happier today if I had never learned more compassion, the hard way by experiencing first hand the conditions I failed to understand earlier.

But I feel like I've learned a new way to look at life. It has to be accepted. It just can't be wished away, or done away with by will or anger or denial.

Hugs, Elaine