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Living with Polyneuropathy CIDP, GBS, & CMT

Can't deal with all the "miracle cures"


#1

I am in a LOT of pain with horrible fatigue. Still having to work 35-40 hours a week and struggling. It's brutal and I'm sure no fun for my husband and friends to watch even though I try to keep my issues to myself.

My problem right now....and I will own that it is MY problem, is that my husband and a dear friend are driving me crazy. It's diets that consist of nothing but carrot juice. Endless books and articles all selling some "cure" or relief from pain. My husband is forever bringing home some oil or supplement that cost a fortune (money we don't have) and does little but upset my stomach. My friend is constantly questioning my doctors and why they don't prescribe this or that.

I've tried to be calm and kind through all this but it is getting to me BAD. I have explained that I don't find their suggestions either medically sound or helpful but on it goes, to the point of nagging. If I would eat this....not eat that....take this, not take that.

We have a good friend with MS and everyone is constantly comparing our disease and her treatment vs mine (except for her and I).

I'm sure I'm not the only one going through this...how do you cope?


#2

The other day I was taking care of my great-grand son and he threw a temper tantrum and the only way to stop him was to ignore it and they will eventually stop. Tell them that they mean well but you have enough problems making it through the day but you are going to ignore them when they try to tell you anything about do this or that. Then do ignore them when they do. And maybe, they will get the message that you have had enough and will stop.Ethel


#3

Unfortunately there are no miracle cures. all the juicing and creams and supplements don't work. What have the neuros done for you. I take gabapentin and tramadal. My GP prescribed Voltaren jel and that helps too. I do find at least for me, if I stay well hydrated it seems to lessen the pain. I drink a lot of coconut water as it is more hydrating.

The only common denominator of this disease is it is different for all of us. Maybe you can sit them both down and tell them the best thing they can do for you is nothing except to give you moral support. Do they have access to this support group, that should help them to understand CIDP better.

Good luck and prayers to you


#4

CIDP It is hard for us to understand. Then to try to explain it to others and yes the pain is even harder for me to understand. It seems to get worse when I get upset or stress every time my wife or friends try to find a cure that is not there. The More they read something the worse it is for me. Because of the stress sometimes we need to not have to think about it finally I told them they are putting in my face I told them I know they love me but when they talk about it all the time. Just try to tell them that the stress. Is not good for you as the asians would say do not think to much. Good luck and God Bless


#5

Maggie, I understand everything you are saying. My version of this is when I complain, whine, yelp, walk funny, etc., my wife tends to counter with one some suggestion that I have already tried and/or rejected. When the same suggestion is made repeatedly, it begins to feel like nagging. I try to tell her that I am just complaining out of weakness, for some sympathy, or to let her know how I'm doing. Her response, then, is to suggest one of the solutions that she has already mentioned a number of times. When I don't follow a suggestion, it starts to feel like I am to blame for my condition. I have tried to protect myself from this by following every suggestion of my doctor. One reason I do this is to get it into my medical records, which I send to any new doctor or clinic. In fact, I did just this two weeks ago with a pain clinic, hoping to see if a spinal cord stimulator might help.

Good luck to you. This is a wicked disease and I hope that things improve.


#6

I found a chronic pain and illness group and I invited my wife she declined. I am fortunate that I have had the opportunity to listen to the diversity that others have used and then try what worked for me and I was comfortable with. I too fatigue. I went out on a disability retirement. To reduce pain I loaded up on meds and found relief. Then I backed down on some meds to a tale ration point . I place wher I could get relief when I needed to rest and have the clearest head possible. My wife knows that when I use the words "that’s interesting " it is my sarcastic but polite way of saying thank you I will pass. I had to tell friends to be supportive they need to look at joining a CIDP support group. It was more effort than most want to put out. My two most helpful things are my adjustable bed. A gaining confidence in which meds worked best and what dosages works for me for the day. I can’t drive for someone else and they can’t make decisions for me. I am good until I’m not then I shut down and rest.


#7

hi maggie

i feel your pain. i have been diagnosed with cidp in 2011 and everybody thought i was on drugs. then i had a relaps in feb this year and was diagnosed with fibromyalgia and to top everything when i am sore and cant walk my suster asks me what did i eat thats wrong. seriously what ever i eat doesnt make a difference been through it all. even some people have a issue with the fact that i use candarell the yellow one. cause thats what the lady that workout my diet said i must use. the above all of this i am diagnosed with bipolar disorder because of the two illnesses. so everything i do is always questioned no matter how i drink my pills eat or sleep.

sometimes i think people doesnt understand what everything is about and in all the non knowledge they have they try to help but is only making it worse.

my husband supports me alot alway there when i need help but can also joke about the pain and the bipolar so it makes it easier.

i feel sorry for our spouses and friends cause living with us cant allways be easy. for example my little girs is 5 years old and she cant sit on my lap or play with me, i cant even play with my pitt bull pure bred. my husband cant even touch me to hard and i cry, so i do understand your frustration but be patient with you family and friends cause at this moment they support you even if it isnt the way you want them to support you.


#8

Hi Maggie, I do believe diet plays a huge roll in our conditions. I have been on a gluten free, anti-inflammatory diet and it does help with pain.

Also, people around you mean well I’m sure. Keep in mind there are some of us without anyone. I do not have a spouse or family within 800 miles of me. I am 65 and work 44-50 hours a week. It would be nice to have someone around who cares and helps. So think of yourself as blessed.


#9

I wish I had a good answer for this. I have had people tell me, "If you just take this supplement, it will boost your immune system!" I tell them my immune system is already too active, and I am taking immune suppressants to dampen it down, and they look at me like I am nuts.

A very well-intentioned lady kept telling me that what I really had was Lyme disease, because my symptoms were just like her symptoms, even though they really weren't.

I just try to stay calm, and gently explain to them that I have made it a point to understand my problem, and that I have good medical care, and there is no miracle cure. If they refuse to listen, I smile and nod, and walk away.


#10

Hi
I have felt the same way. I have gone vegetarian, gluten-free natural and Tried juicing. I have gone to a chiropractor, acupuncturist and now in a gym 3 days a week. Which is a catch 22. Everyone wants to help I get that I have learned to say I am currently working with my doctor investigating some new avenues from nutrition to medicine. If they keep going I tell them everything I try takes about 6 months to see results so if you give me some information on it I will present it to my team ( doctors) and we will see. Thanks so much for caring for me. Then leave it at that. I also say can’t introduce too many things at once or I won’t know what works so it’s a slow process which just takes time. They usually stop. I also tend not to be as honest as I would like about how I am feeling cause it causes your love ones to rise up and want to fix it. So for family I ask them just to be a safe place for me to be honest without having to discuss my life choices ever time. (I too still work.) hope this helps Gigi


#11

GiGi, Yours is the best advice I have seen so far. Thanks


#12



Cgro said:

Hi Maggie, I do believe diet plays a huge roll in our conditions. I have been on a gluten free, anti-inflammatory diet and it does help with pain.

Also, people around you mean well I'm sure. Keep in mind there are some of us without anyone. I do not have a spouse or family within 800 miles of me. I am 65 and work 44-50 hours a week. It would be nice to have someone around who cares and helps. So think of yourself as blessed.
As do I Crgo ......I was following a gluten free, anti-inflammatory diet long before I was ever diagnosed. Mostly vegetarian - which I get heat for because they want me to go paleo.....lots of red meat - which I don't like and prefer not to eat for moral reasons. I'm sorry your so far from family - my family has all passed. I have my husband and a few close friends so yes, I am blessed.

#13



Maggie said:As do I Crgo ......I was following a gluten free, anti-inflammatory diet long before I was ever diagnosed. Mostly vegetarian - which I get heat for because they want me to go paleo.....lots of red meat - which I don't like and prefer not to eat for moral reasons. I'm sorry your so far from family - my family has all passed. I have my husband and a few close friends so yes, I am blessed.



Cgro said:

Hi Maggie, I do believe diet plays a huge roll in our conditions. I have been on a gluten free, anti-inflammatory diet and it does help with pain.

Also, people around you mean well I'm sure. Keep in mind there are some of us without anyone. I do not have a spouse or family within 800 miles of me. I am 65 and work 44-50 hours a week. It would be nice to have someone around who cares and helps. So think of yourself as blessed.

#14

Thank you everyone! All very thoughtful and helpful insights. And it means a lot coming from folks in the same boat as myself. I saw a quote I really liked "You don't get it, till you get it". Lots of truth there in my opinion.

When I was diagnosed my neuro told me two things.....1. there was no cure and would likely not be in my lifetime and 2, I was going to get worse, hopefully gradually but he couldn't promise that. So my focus is trying to maintain my quality of life as much as possible. And the harder task....helping the people who love me accept this diagnosis, support me in MY decisions and enjoy everyday as much as my health allows. Some days that is not much.

I'm in a bad position as my insurance company at this point won't cover IVIG. And believe me we have fought about it. I can't tolerate steroids....and my doctors all supported my decision not to go that route. So far we can't make gabapentin work - makes me more fatigued, depressed and too foggy to do my job. Lyrica really messes me up....I do take Tramadol and valium *(for cramping) but again keep it really minimal because I don't want that to get to the point it's not effective.

I did learn Friday that I'm being referred to a pain specialist so I'm hoping he'll have something to offer.

Thanks again for all the input. It was appreciated,


#15

Do mind mentioning the kind of pain medication you use that works? I have Dystonia, a neuro-muscular disorder that causes spasms in my back and neck. Luckily, I have Vicodin on hand. I don't know how I would get through this CIDP with an aspirin. The burning nerves are way worse than the Dystonia pain. I'm waiting for my first IVIG as soon as the insurance company approves to pay for it.

Robert Martin said:

I found a chronic pain and illness group and I invited my wife she declined. I am fortunate that I have had the opportunity to listen to the diversity that others have used and then try what worked for me and I was comfortable with. I too fatigue. I went out on a disability retirement. To reduce pain I loaded up on meds and found relief. Then I backed down on some meds to a tale ration point . I place wher I could get relief when I needed to rest and have the clearest head possible. My wife knows that when I use the words "that's interesting " it is my sarcastic but polite way of saying thank you I will pass. I had to tell friends to be supportive they need to look at joining a CIDP support group. It was more effort than most want to put out. My two most helpful things are my adjustable bed. A gaining confidence in which meds worked best and what dosages works for me for the day. I can't drive for someone else and they can't make decisions for me. I am good until I'm not then I shut down and rest.

#16

You have my sympathy! Both my wife and daughter 'know what is good for me' and they probably do but none of it has anything to do with CIDP. I know they are trying to help but it is hard enough to find some enjoyment without having to forgo the few things I still can enjoy. Perhaps admitting to four bottles of red wine a week invites criticism but it sure helps to relieve some of the frustration and dare I say guilt? (Irrational I know but I hate being a nuisance). A friend is convinced that ' alternative medicine is the only cure (for anything!) and gets quite indignant when I don't rush off and buy some new miracle concoction from the herbalist.Perhaps polite gratitude for the concern of others is the wrong tactic but at least they recognise that something is wrong, plenty seem to think it's just a minor inconvenience! Perhaps by risking offence and telling people that you are putting your faith in the medical specialists and will follow their regime exclusively, might convince them to stop wasting their time and yours. Good luck! N


#17

I do not wish this disease on anyone altho at times I would wish the pain and fatigue on them for 1 hr so they realize exactly what we are dealing with.I went to a center of excellence for neuropathy (NOT CIDP) the neuro told me that CIDP did not cause pain. I told him I belonged to a CIDP support group and everyone would take exception to that. I never bothered to go back. I take my gabapentin, pain pills when necessary, pray a lot to handle the pain and just live a day at a time.


#18

Maggie: The most tragic flaw in the design of humans is the inability to convey the emotional and physical problems one has to another, even your spouse. I've wasted thousands so far based on sheer desperation to get better. My lifelong struggle with ineffective thinking and poor judgment magnified itself ten-fold after getting CIDP. This is my first day on the forum and it's a real eye opener as to how different this disease effects people, as I've not yet met anyone else who has it. Luckily I don't have people suggesting cures because of their lack of knowledge on it. Please update us on how you are doing.