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.

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

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.