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Living with Polyneuropathy CIDP, GBS, & CMT

Crying Alone


#1

#LivingWithCIDP

Hi I am Cam…
Made this topic because right now I feel so alone… Suddenly I tear up.
I just want to be real honest here. Please do not think otherwise.
I did try to end it up… still do… because I am so tired. So alone and right now wonders why I am even doing this… What is the point?
No one else will ever know anyways.
No one around me or knows me about this site where I let out my feelings
All is so pointless and I am so afraid of everything around me… Can’t sleep right now… I have no one to talk to… Everyone else are so busy even the one I am with with house works… I can not talk to my self they will think I am crazy…
I think I am crazy too… Talking in my mind and typing it. Staying up all night… staring at nothing but the usal stuff…
Can someone talk to me… About something anything… Painkiller are not working at all!!!

Take me God! :cry:


#2

This sounds like me :bowing_woman:t2:! The ONLY thing I have found that works when my medication isn’t, is sitting on my kitchen floor with my feet in the freezer :woman_facepalming:t3:. I sit there until they’re so dead I can’t feel the burning anymore! Probably sounds nuts but when you’re in excruciating pain you will give anything a go!
Good luck Cam x


#3

No matter I take a lot and assorted painkiller meds like candy… Nothing happens! Overdose does nothing! Damn! There are so much stuff I want to do but can’t… I want to run just run far off no where worry nothing just run. Even if I want to travel or ho somewhere else.
It HURT so bad I can not take it anymore… Thinking… Feeling… Crying is even pointless no one comforts they even get mad with all the waterworks like a child. F! Damn night whem will it end… Mornings nothing but sitting waiting for endless days…


#4

:broken_heart: Where do broken people go? Where do burdens like me go… How can I end something that is so endless… What is the point of all this… Damn! Still talking to my self… What the!?
WHY CAN’T PAINKILLER MEDS JUST KILL ME FOR GOOD!


#5

Cam
I am sorry you are feeling so bad.
I wish there was something that would make things better quickly for all of us.
It is lonely to be home all day everyday, not being able to do the things I used to be able to do, everyone has things to do but me.
One evening of dinner with family at home and today I am a complete mess.
I think the more I complain the less they hear because they hear the same thing everyday and can’t relate.

I am glad you are able to come to the website. Depending on where you are right now:

  1. Talk to your physician and see if you can get one on one counseling

  2. if not an emergency , call the national crisis line 24/7 at (775) seven eight four eight zero nine zero.

  3. if emergency, please call 911.


#6

the National crisis number 775 seven eight four eight zero nine zero


#7

If I CALL that… will my CIDP be cured?
Will I be able to walk with out help… Better yet run? Will that call make all kinds of pain I am feeling right now be gone…

No offence Greenpea…Thankfull still!
Perhaps donation for daily painkillers saves me half of the pain of everyday. or maybe a new wheelchair can cheer me up.
But anyways I know you get it. Days with CIDP just makes you do this… Type F and Damn stuff at nights like this…
Atleast I can still type… Hand pain is so hell some times.

God why?


#8

Have you tried any alternative options? I had some luck with essential oils. I’m not in the medical field but am willing to share what helped me with my symptoms. One thing I do know is that stress helps nothing. Please stop beating yourself up emotionally. It doesn’t help anything. Tell me where the pain is, I’m willing to listen.
Narda


#9

PAIN… Where to start…
Physically… Headaches with or without sleep
All the “Aches” can define all over my body. Moving or still. Mentally and Emotional PAINS… If you have time to read my post. Warning might just brings pain to you as well… Hell this Life! Everything was fine before all this “Disease” ever met me. Honestly I rather have canser or terminal disease… So I know when it will end. But this CIDP…who the hell made this up.

Sorry anyways… Good for you.
Thanks for listening anyways… Just pehaps feel nothing for me… I am good with typing endless pointless stuff here…

Still asking God!


#10

Hi Cam,
First of all, don’t speak for me.
Now a little, I was stricken with GBS in 2013. I was paralyzed from the neck down. I am better now with some residual effects. I have numbness etc still in my legs. I have horrible muscle cramps all over my body, mostly leg, arms, hands and feet. I was diagnosed with fibromyalgia. When I get cold it’s much worse for me. I still live on my own. I found(for me) that a lot of the pain meds made things worse for me. Have you experienced that at all? I’m here and we don’t have to deal with everything all at once. What country/state are you in? I’m in Florida. When were you diagnosed? Are you on Neurontin/gabapentin?
Narda


#11

Oh Cam-
I am so sorry to hear about your pain, frustration, loneliness and fear. It is awful to live with CIDP and feel like you have no options. It all just sucks. Your sadness is felt by all of us. I hope you know we are listening and I wish I had a magic wand to fix everything. I wish words could heal your pain. Please know I am thinking about you and if I find that magic cure for you (and me) I will let you know.


#12

Hi cam we all feel your pain. No one has any idea what we go through. The ones that know best are on this site. I think finding happy things jokes, books, movies,etc. they help me. Yoga has help me a lot along with swimming and riding my recumbent exercise bike. Please don’t be hard on your self that will only cause more pain and scary thoughts. I am going to send you a video that will hopefully help you. Hang tuff love and CIDP SUCCESS. JUTTY


#13

https://search.yahoo.com/search?p=arthur+boorman+video&fr=iphone&.tsrc=apple&pcarrier=Verizon&pmcc=311&pmnc=480

I hope you find this video helpful


#14

Cam, Seenie here from Moderator Support. I’m so sorry that things are so difficult for you. You’re not entirely alone though: people here clearly know how it is for you, and they care about how you are feeling.

We cannot see your location (a technical glitch caused by our migration to a new platform last year), so it’s difficult to know where you can best find help if, in the dark of the night, nobody is here to respond to you. Just below the banner you’ll see a HELP tab. If you click on it, you will find many resources, and some emergency lines which are staffed by professionals 24/7.

Please know that we understand and we do care.


#15

I’ve been where you are and talking with a counselor has helped tremendously. This could be me writing this but, I have learned that no matter what anyone says, actions speak louder than words. My family will never get it and at this point I don’t care if they ever get it. No one can understand the pain aggravation fatigue and stress that someone with CIDP goes through unless you have CIDP. To expect someone to understand the daily struggle is not reasonable because, they have no idea what it’s like. You should expect courtesy, help and compassion from anyone in your immediate family. Unfortunately I also do not get care, compassion or understanding from anyone that I live with. They expect me to do the same things that I did before and I just can’t do them anymore. So I do understand what you’re talking about and I hope that my private message to you with my phone number will be used so that you can reach out and we can talk and hopefully it will help you to understand that at this point, you have to do what is necessary for yourself. You have to take care of your needs above everything else and if you’re not getting pain relief you need to go to a pain management specialist, who can help you. I was put on methadone because of my extreme case of CIDP and the excruciating pain that I was experiencing, pretty much all over my body from my neck straight down to my fingertips and from my lower back straight down to the toes. The pain hurts beyond belief and there were days when I wished I could just fall asleep and never wake up. I think anybody who has an illness similar to ours has had those thoughts before. Your not alone and I wish you the best. Please think about calling me sometime.

Pam


#16

I have been diagnosed with the Miller-Fisher variety of GBS.it will be 4 years in March. I was told that tight compression socks might help - and they have! I am still a quadriplegic, but hope to use hands & feet again. These socks are rather painful for me to put on, but they do seem to work.

Sorry you have this struggle, and will pray that the pain will be overcome. I am 70, and unwilling to give up!

Steve


#17

So sad for you. Lonliness is so hard to conquer when you are suffering the way you are. I take a 800mgs of gabapenten 3 times a day. If you haven’t tried it yet get your doctor to prescribe. Most pain killers don’t touch the type of pain CIDP causes. I will add you to my morning and evenings prayers. May God give you relief.JDU


#18

So sorry to hear how you are suffering. I know it can be very lonely because no one who does not have this disease understands. I’ve had it since the mid 80’s, in some respects, it’s better for me now. I am less able to get around, but the pain and other discomforts are less than 5 years ago. Honestly, I believe it’s partly because more nerves have just stopped sending pain signals as the thing progressed. Thank God, I can still walk with crutches even though the Neuro told me 3 years ago he did not know how I managed to still walk. I try to keep my mind very busy with various projects and helping others via those projects, These things are home-based via the internet so It’s doable with limited mobility. I find that so long as I can stay busy that it helps a great deal. So far as counseling goes, I never did it, until about 3 years ago, frankly, I did not believe in it. But a family member put me onto the most amazing psychologist who really, seriously helped me deal. Maybe you could be so blessed to find such a person. He helped me refine some self-hypnosis and pain management tricks I had self-taught many years ago while he also gave a lot of very down to earth practical advice for emotional management. I have no idea how you would find such a great doctor but he has done far more for the quality of my life than the neurologists. Other than that, I’m currently only on prednisone, and Lyrica. Some ibuprofen. I use to be on codeine as well but have not used any in about 3 years. I did not like the idea of codeine anyhow. So in summary, I hope you can find some practical help and pull your outlook back up to a happerier level. Try to focus on others if you can, it’s great medicine for you. Try to find a real mensch of a counselor who can help you. Also last but not least, watch out for drug interactions or overdosing. They can make you miserable. I actually had an interaction with St. John’s Wort and Lyrica. Made me so dizzy, lethargic, foggy brained etc. I did not discover this interaction until recently after years of having the side effects.


split this topic #19

4 posts were split to a new topic: Polyneuropathy friends, where are you?


#20

So so sorry to hear you are having such a difficult time these days. Your comments seem to reflect your frustration with whatever Chronic Pain Treatment regimen you have been directed to follow that doesn’t appear to be helping or working for you. Most unfortunately, is sounds as if you may also have a problem with Depression as well.

I strongly encourage you to consider doing 2 things ASAP:

a) Contact your primary MD or whoever is prescribing whatever Pain meds you are
taking to request a referral/name of a Pain Mgmt and a licensed Mental Health
MD.

 It is clear from your comments that you need to seek Help Now as your current 
 treatment plan  is Not Working for you.

 CIDP is a Chronic condition that can be a challenge to treat and even harder at 
 times to live with. 
 Believe me when I say this particular site has people, me included, who 
 understand what it is like having to live with a chronic incurable condition medical 
 science isn't yet able to "fix" or correct.   
 It CAN be Better Managed though.  
     
Talking things out with a professional, an unbiased listener who can help you better 
 deal with the Depression/Frustration  you are experiencing would be an Excellent 
 step to take at present.  That and informing whoever is directing your CIDP 
 Medically right now would be really Beneficial.  

b) If you have a Pain Mgmt MD directing your treatment right
now and assuming you have already identified the degree of ineffectiveness the
med regimen you’ve been directed to follow isn’t working all that great for you
it is time for you to obtain another Pain Management opinion ASAP as how to
obtain a better handle on the pain you do have.

If you are not seeing a Pain Mgmt specialist who is directing your care, ask your 
MD for the names of a few of them, look them up online and see if they are 
located anywhere near where you live.  

If in fact there are none available anywhere within reasonable driving distance from 
where you live, do an Online to search for a Pain Management specialist that is 
associated with the nearest University level Teaching Hospital  where you live. 
Make an appt and go to be seen.  

Sadly, there is no magic “cure” for CIDP. I have had CIDP for almost 9 yrs now and I agree that it is a challenge to live with. CIDP causes pain on a physical and emotional level which is something other folks, me included, well understand. That is NOT to say there are no other approaches that can help make things more bearable for you.

If you have access to a heated/ Indoor pool, get into the water. Warmth and water can be very soothing that places no added stress on your affected problem areas. I assume you are already using a Heating Pad? If not, do so. Heat, within reason, can help you feel more relaxed albeit on a temporary basis.

Depending on the relationship you have with whoever your primary MD is, go in to speak with him/her about how the CIDP is making you feel and say you really need help NOW.

If this isn’t something you can do, head to the nearest ER or a larger hospital facility and ask for help. If nothing else the facility should be able to give you name/names of Pain Mgmt or Mental Health providers local to where you are. Your pain medication, whatever that currently involves, doesn’t appear to be helping much now. Rather than mixing and matching yourself, you need MD level assistance in directing you accordingly.

Not speaking to anyone about how your currently feel is Not An Option.
You DO need to talk it out with someone who is qualified professionally to help.

If you can’t speak to a family member, a friend or your prescribing MD as to how you really are right now and if you don’t know of any qualified Mental Health provider in your area, call the nearest Mental Health facility and ask for names and phone numbers of MDs that see/admit patients there with Chronic Pain/Depression. At least with a name or three you would have a starting point.

All else fails or if you are simply Not Able to Handle the matter at all, get yourself to the nearest ER in whatever manner it takes to do so for Help. Personnel there can likely provide you with names of appropriate providers in your local community. And yes, you have to ID the need to obtain Mental Health services too.

If you can’t get yourself there, call a friend, call a taxi or worst case, call 911 and be clear as to what the issue is so that you can be directed accordingly.

As hard as things are right now, there IS help available. Call your primary MD or whoever is prescribing medications for you and tell that person exactly how you are feeling then ASK FOR HELP.

This is a step that YOU Must Do.
Please DO THIS NOW. Don’t let another day or weekend go by without informing your provider(s) of care you Need Help Now and ask for direction as to where to go.

The Opioid issue in the USA is serious. DO NOT try to mix and match whatever Narcotic analgesic meds you may have at hand because you don’t know what else to do.
Effectiveness of pain medication can wear off over time. All that means is it may be time for a medication Change, NOT necessarily an addition to whatever you may already be taking that may not be working as well for you.

PLEASE REACH OUT FOR HELP, sooner rather than later.
Keeping you in my thoughts,
L