I can not imagine having a diet that included sugars *starches,fruits* in my diet now that I have pn. Those things make mine worse.

I would also question any wheat products.

For me personally, my diet includes lots of healthy animal and fat and very low carb.

I guess everyone has to research what diet is best for them. My opinion sugar/starches are the arch enemy to my body, causing inflamation, cholestrol and a host of other inflictions.

Susanne, I started crying as I read your post, because I don't want to know that this is permanent. I won't be able to deal with that.
Not at 30. While everyone I know is off getting married, buying houses and having kids, I am suffering and barely surviving. I truly don't want to get out of bed anymore. For what ?

Smoking is my only vice, really. I don't know what to do with myself otherwise. I live alone, and am very high strung. I don't drink alcohol or smoke pot. I don't have a husband or children, or a career, or pets. I have nothing, really..

Things are looking grim. I'm moving into a small apartment this month also. I'm on welfare and work part time cleaning.

I am hypoglycemic so I have to have sugar often. I studied nutrition for two years so I know all about food. I'm finding that one of my meds is making me only want to eat carbs and sugars. Amitryptaline. Dinner foods don't interest me and actually turn my stomach.

Anyway I don't think I'll win the battle for more pain meds. I just don't. I brought my dad in with me and it didn't change anything.
I've tried or am taking every other medication for this like lyrica, elavil, cymbalta..

I'm feeling like I've had enough of fighting at this point.
October always makes me feel like this.

Please don't take anything I say too much to heart- many people on here have much more encouraging experiences than I do! And those who know me well here know that I have a talent for saying the wrong thing- I am on the autism spectrum which affects what I write. I want to be informative and I do empathize, but I am often too blunt, and we are all different in our outcomes and situations.
It sounds like you have seasonal affective disorder- if October is a trigger for you. I enjoy the fall aesthetically, but the colder weather makes me a shut in.

Could you get some kind of counseling? When life seems meaningless and too much trouble, and I have been there quite often, stepping back and reconstructing a life beginning with the things that provide enjoyment and distraction seems to help. Even the simplest things. For me it has always been needlework, even though I am not as good at it as I used to be.

I understand the frustration about smoking and eating- sometimes it seems like food is one of the few remaining pleasures in life and I am overly fond of sweets though they are not good for me. I can see how quitting smoking, which while not good for you is probably not contributing to your problem, would just be another burden at this point, and deprive you of a stress reliever.

Please try not to give into despondency. If you know that this is a bad time of year for you be especially gentle with yourself. It sounds as if a lot of other things are going on right now besides your health. Cleaning is a difficult way to make a living, and probably exacerbates your condition with all the physical stress.

Please forgive me for saying anything which upset you. I have had a good life in spite of this disease, and I have had times when I lose sight of that. Honestly, abuse and neglect in childhood has had far more negative impact on my life than CMT has. I am more of an emotional cripple than a physical one despite my walking sticks and handicap plate.

You have to keep fighting, learning, advocating for yourself. Please. Things change all the time, and some changes are for the better.

No don't worry about it. You didn't say anything wrong, I'm just emotional right now.
I enjoyed your last response. It was helpful and gave me hope.

I too can sometimes be blunt and just say exactly what I'm thinking before considering what affect it may have on the recipient. I understand that. I did have a panic attack but have clonazepam and am better now.
Definitely have SAD. I'm moving soon,so that's a stress, cleaning sustains me but hurts my body. I'm not being paid on time by my boss , which doesn't help.
I have a personality disorder as well, so between that and the horrible pain from neuropathy, I am nearly always upset or in crisis.
My case worker cancelled our Monday appointment, but I have friends and family to call if needed. I'll try to stay close to people for the next little while.
I tend to get extremely low but then bounce back with a resilience that sometimes surprises me.
I am quite frankly darn proud of myself for getting this far.

This group is helpful, and the Facebook support group for pn is even more helpful as there are fewer members and it is more about support than information.

I'm rambling, so to sum up-thank you Susanne. You're a strong woman and I admire you coming online to help others like myself. I will most definitely keep you informed about any discovery regarding CMT in the future. Probably in December when I meet the best neuro in my city.

Silver

At the bottom of this depression is the pain, right? So start by fighting this pain. Even if you don't want to quit smoking, I just don't know how your body can fight disease with all those poisons in your body. I think that any reasonable doctor would tell you to quit, yes even if it's hard. What is your diet like for a day?

I highly recommend everyone listen to these podcasts:
http://www.beatingneuropathy.com/
If there is one of these clinics in your area, you might try checking it out.
Ron

Have you had your Vit D checked?

Hi Sally - Not recently ,no

But I've been supplementing 2000IU a day for quite a while. Everyone in Canada needs to ,as soon as summer is over.

Re : smoking. My GP thinks I have enough stress right now.
I take Phytoberry by Progressive - a whole body antioxidant.
I eat better than anyone I know. I make shakes every day , eat organic whole grain cereals , white fish, lean meat once or twice a week , nuts and seeds , drink green tea and water with lemon , tons of fruit , plain yogurt with raw honey , etc. I am very active and slim as well.
To say that smoking is keeping me sick is not really accurate.
My body is so accustomed to it after 18 years. I'm under 12 a day and always have been. I have an electronic cigarette that I use often.

The problem with gluten free foods is that if you're not a celiac, these foods are actually packed with sugars and oils. It's in no way healthier than food with gluten. You're also missing the fibre from whole grains .This is In general ,of course.
I worked at a health food store for years , so I'm not just making this up.
The cost is very high as well. So if it's not an allergy issue then there is no point.

Is there a reason you can't have a pet? It might be a wonderful comfort for you. With financial limitations, or if you have allergies, I could suggest a rat! I've had them in the past and they are sociable, low-maintenance pets. These days I have an elderly rabbit who loves to be held. Since I've been making an effort to hold and pet her for an extended period every day, I find that it's at least as comforting for me as it is for her.

If possible for you to volunteer at an animal shelter, that's another good way to get a nice stress-reduction "fix."

Like many others here, I totally relate to and sympathize with your frustration in dealing with doctors and trying to get a diagnosis. Wish you the best.

lined_in_silver,
You came here for help, so I am trying to help. Do you eat any vegetables, you didn't mention any. I think these are the most important foods for healing and staying healthy. IMHO, you are in denial about the smoking. Think about what you are saying. My body is used to processing the hundreds of toxic chemical in the smoke, including formaldehyde, benzene, polonium 210 (radioactive), vinyl chloride, chromium, arsenic, lead, cadmium, carbon monoxide, hydrogen cyanide, ammonia, butane, and toluene, so it's ok. I don't know if any of these things are causing you health problems, but you can't say they are not either.
Ron

Ron is correct here and defiantly you are in denial and that's normal since your trying to cling and stay connected to your old life in some way by not giving up smoking, god knows you have given up enough already.

You are young, probably the youngest Ive seen but the upside is you would have the best chance of slowing down the progression of PN if you take it seriously but you continue to smoke so your killing your chances some what.