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Living with Polyneuropathy CIDP, GBS, & CMT

Depressed with GBS


#21

Dear depressed with GBS
U sound just like me except CIDP for 5 years. Sever pain in my hands for almost two years before I found the right medication. Do not live with pain. Change your medications, and if Dr. doesn’t seem to care, go to pain management Dr. U can’t live long term with pain!!! It’s makes u depressed and crazy.
The extreme exhaustion I deal with everyday, but all I can tell u is “ it gets better”
Hang in there and gets some meds that help u.
Kim


#22

Thanks for the advice! I sa w my neurologist yesterday and told her I am NOT leaving here until we have a feasible pain management solution ie one that works but wont drug me up. We increased the dosage and frequency of cymblata and lyrica and added tramadol for general extreme foot discomfort from my leg braces. She said to give it 2 weeks and if it isnt better we will try something else. I am a HUGE advocate for myself, but sometimes it js exhausting! What happened to the days when you trusted what the dr gave you would fix you, not give you GBS and CIDP, lol?!


#23

I feel my trust for drs. was shaken because of my experience with GBS. I believe that there are good drs. out there but many who don’t understand problems that are debilitating and can’t be so readily seen in labs or by the eye. Now, it seems too that drs. are pushed for time and aren’t reimbursed for taking extra time with patients. I’m so glad for this forum where you can gain knowledge from the experience of others and bring it back to your dr. You just can’t give up on finding the right dr. I’m glad your dr. is open to trying something to help you instead of dismissing you. That means so much!


#24

Thanks for the support. My PCP is great, but like you said, too busy to handle all of my issues in one appointment. I will begin seeing a psychiatrist soon, I just have days where I feel so low and barely function. And those are not even the days my fibro is flaring up necessarily (although there is a correlation)


#25

Hi, I am new to the site and just reading this. You described my feelings perfectly. I have had GBS/ Miller Fisher variant for a little over 3 years now. Lately I feel like my symptoms are worsening and doctors say it’s common and polyneuropathy from GBS. Like you, I have good days and get a bit over zealous when I feel a bit better but then I pay for it BIG time being layed up for days. Trying to find a happy medium. I am supposed to return to work next month but seriously don’t know how I’m going to do it. Trying to stay positive, keeping the faith.
It’s helps to have this forum to read what I’m going through is norm for GBS. I am sorry so many suffer the effects of this horrible syndrome but and glad to have support. I remain hopeful to myself and all of you.


#26

First, welcome! I am glad you are here, and like you said this is a great place to feel normal and know you are not alone!

Going back to work would seem quite stressful, i am here to listen if you want to chat more about that. I was a teacher before I got sick, I just dont see how I can go back to it in the future. At least, not the same way that I was, full of energy, going 24/7.

With the fall coming here I am once again finding my neuropathy acting up, and my joints are stiffer. Yuck! You get old so fast with GBS!!


#27

I sympathize with feeling like we are aging fast. Age never bothered me before GBS, I always considered it a state of mind. Now I feel like I have no control over it. I can be doing all the right things but still have worsening symptoms. I’m sorry you suffer with the colder weather. I usually am worse in the heat but so far even with the cool weather symptoms haven’t improved. My doctors are a bit baffled and now saying it may be norm with polyneuropathy GBS caused.
Do you mind me asking how you deal with being out of work? I’ve been on temporary disability on and off for 3 1/2 years. I going to give it one more try in November and then make a decision about going on permanent disability. It makes me sad to think it may come to that and certainly affects my feelings of self worth. Thanks for chatting.


#28

Just so you know, I love chatting, so feel free to post anytime. I am not dealing well with being on disability. I am only 35 and my feelings of self worth are quite low right now. I am seeking a psychologist to talk through these and other issues, but medicaid limits my options for finding one who is taking patients AND accepts medicaid. I may have to pay out of pocket, which if it is just once a month i can swing, but if more that will not be possible for me. I spend my days cleaning up my parents’ house (i cant live alone, it just isnt possible at this point), going to physical therapy, doctors’ appointments, IVIG, and doing crossword puzzles and writing. I try to stay in contact with as many friends as possible, but that is hard since they have lives and i dont. But I am thankful to BE alive after this whole ordeal; as you can see I really need a therapist, haha.

My issue with disability is my age. My career was just starting to take off when I got sick, and now i will never recover it because i cant possibly offer the same dedication i did before. But my position of disability is precarious as well because it is not through Social Security. I didn’t pay into it enough to qualify (in Chicago, where I worked for 11 years, teachers pay into a private pension, not SS) Then I moved to IN and started working in a smaller district, but only for a year, so not enough to qualify me. The school district required me to get the flu shot, which caused my GBS, so rather than have me sue, they made sure to give me disability that is to be evaluated yearly to see if I still qualify for it. Just a little background my personal history there to give you an idea of the extra stresses I deal with. I am certain you have them too.

I am glad the cold doesn’t bother you like the heat does, it certainly isn’t as bad as the heat for me. I am just worried because my leg braces are very heavy and i dont see how i can safely maneuver in the snow to get to all of my appointments in the winter. My feet became very messed up from GBS, I am in essentially platform sneakers and giant leg braces to fix them. I kinda walk like the tin man from the “Wizard of Oz” haha!


#29

Wow! You acquired GBS through a flu shot also. I got it at the doctors recommendation because I have rheumatoid arthritis and asthma. They stressed that because my immune system was compromised I shouldn’t take the chance of getting the flu. They didn’t advise me that my chances of getting GBS were higher due to my immune system being compromised. I love the analogy to the tin man! I can relate but I’m lucky enough to only use a cane.
I hope you are able to find a good therapist. I was lucky enough that my insurance covered therapy sessions and a life coach for ten sessions. I wished I could have continued them but couldn’t pay out of pocket. I’m am trying for the last time to go back to work full time in order to keep my health insurance. I also work at a school, a college in NJ. It’s a great job and I would be sad to give it up but it’s been very difficult to work full time and I have not been successful at doing so. I hope this time will be different.
I tried to sue the pharmaceutical company without much luck. I am so sorry you suffer with GBS symptom due to doctors/ ER denying it could be related and not documenting it. I’m here if you ever want to talk. Hope you have a good evening.


#30

I was thinking more about your situation and wonder if you have heard of the VAERS program (vaccine adverse event reporting system). It’s a site where you report your reaction to the CDC and they keep a tally of these reactions. The pharmaceutical companies set aside a percentage of money from each vaccine to use in lawsuits due to these reactions. Related to that you can hire a vaccine lawyer to represent you free of charge (they get paid through the program). Unfortunately, I am only going to receive a minimal amount, not even equal to my yearly salary because diagnosis and proper tests were delayed so I don’t have much supporting documentation. I wish I had known what I do now and had gone to a renowned hospital immediately. Everything happens for a reason though.

Also, in NJ we automatically get Medicare and Medicaid when on disability so Medicare would cover counseling. Do you know if your state works that way? There aren’t many Vaccine lawyers out there, if you are interested in speaking to the one I used I can forward her info. I hope this helps you.


#31

I had to use a 3rd party company to help me qualify for medicaid, things in IN are ridiculous. I did try to report the bad vaccine to the CDC, the hospital had me call them, but I didnt know the batch number and things like that so I think they dismissed it. I thank you you for your information, but I am just tired of paperwork, you know? I definitely fill out all that I have to in order to keep my insurance disability, but I dont think i have a fresh fight in me.

My immune system was compromised when i got the flu shot in october 2016, i was trying to recover from an upper respitory infection, and i told the nurse that info, but she gave me the shot anyway. I have heard that she is no longer employeed by the school corporation. Good luck with going back to work, I hope you can find a way to make it work. I dont aotumatically get therapy visits on IN medicaid, but i am willing to wait it out to see a therapist. An office returned my calk yesterday, they said it will be a few weeks to get me in, but i am hopeful!


#32

My sister lives in IN and says the same thing about the practices there.

I’m so sorry you are going through all of this. I hope things turn around for you very soon. God bless xoxoxoxo


#33

Honestly, I have good days and bad days. But I truly believe everything will work out in the end. I have to, or I will lose my marbles. Take this morning for instance, I was on the phone for 2 hours back and forth with my doctor and the pharmacy about my anti anxiety medicine and pain med (the pharmacy wont release it to me w/o prior authorization from the doctor which the dr said she gave). It is all about patience. IN is a shit show though, excuse my language. Very socially backwards and punishing to those who need social services. I would rather be working too, but that isnt possible right now.

Thank you for listening and for the prayers. Talking really helps too!! I look forward to our chats!


#34

Just thought I would say hello and hope you are having a good week.


#35

thanks for checking in! I hope you are having a good week too! It is busy with paper work again, and I have done something to mess up this thread but oh well :slight_smile: I have IVIG next week so I will be down for the count I am assuming, sometimes it goes great and i feel fine and other times i cant function at all, it is very strange. How are you doing?


#36

Good morning,
Sorry, I missed your message and just saw it.
Been down and out since trying to return to work on 11/1 which I have been unsuccessful at. Very depressing. Trying to figure out permanent disability. Hope things are good with you.


#37

i am so sorry to hear returning to work didnt work out. i know you are feeling badly about it, but it’s just another step in life, another path you have to take. i would consider getting a lawyer to help assist you with the permanent disability red tape. my parents got one for my dad and they were successful on the first try. i really am so sorry work isnt a possibility anymore, you are in my thoughts, for what it is worth.

things here arent great either. i found out a few weeks ago my foot drop is still so bad that i need surgery on both of my achilles tendons to elongate them. it’s the only chance i have of walking with lighter braces for the rest of my life instead of these 10lb afos i have now. i may have to go back to a nursing home to recover because my parents house cant accommodate a wheelchair.

im here all day, not appointments to go to today if you want to keep chatting.


#38

Again, I am very sorry for not getting back to you sooner. I was getting the notifications in my email and then they stopped. I’m getting used to looking at the site now so I don’t miss messages. I enjoy chatting with you.
You have been through so much and now to hear about your dropped foot and possibility of surgery is horrible. You sound like you stay positive and that will get you far. I know it’s not easy. I pray the surgery helps so you may walk again.
I have to ask about your doxies, how many do you have? My late brother loved them and bred them


#39

i try really hard to stay positive because it’s a miracle im even walking at all. the doctor that diagnosed me said i would never walk again, so im thankful for any and all progress i make. the surgery makes me nervous because im worried ill have to go back to a nursing home for awhile and that will just depress me a lot. i enjoy being at home (my parents’ house) and i stay busy here. at the nursing home i did all of the activities, but it was hard to sleep at night.

i have one smooth coat, red dachshund. his name is gus. he was the fat, roly poly of the litter and he reminded me of the fat mouse named gus in cinderella. thus his name was given :slight_smile: he’s very active but i have to watch his weight because he plumps up so quickly! right now i have him on science diet weight loss kibble. i cant have kids so he’s very special to me, and has been crucial to my emotional recovery. he’s a big snuggler and senses when im upset and will come and give me kisses. sorry, i really love my dog lol! then my brother an sister in law have a doxie/jack russell dog and a doxie/beagle dog. they arent good with kids, at least our dogs arent, but theyre great for us.

i love chatting with you too!! it’s nice to make a connection with someone on a forum. it’s so easy to talk about issues with you. i can tell people how im feeling or how my ivig treatments went, but they cant truly understand, you know?

i really hope applying for LTD goes well. i get mine through the school system here, not social security. i think i told you that already, sorry! brain fog is still an issue, which is very frustrating lol! makes me feel ancient!


#40

Lol :rofl:about the brain fog! I hear ya! I will be sure to use a lawyer if I apply for LTD. I’m going to keep trying for another month. My HR department suggested I wait until the new year because I will get a new bank of sick days and FMLA that will at least allow me to keep my health benefits for my family a while longer.

Love the name Gus and the story behind it, so cute. Our pets make such a difference for us, don’t they? They always show unconditional love :two_hearts: