# Support **URL:** https://forum.livingwithpolyneuropathy.org/c/support/28.md [Latest](https://forum.livingwithpolyneuropathy.org/latest.md) · [Categories](https://forum.livingwithpolyneuropathy.org/categories.md) --- ## [About the Support category](https://forum.livingwithpolyneuropathy.org/t/about-the-support-category/2544)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 0
Having a rough day? We're here to listen. Even though we have the diseases separated to deal with disease specific issues. PLEASE don't hesitate to offer a hand up to anyone needing it --- ## [What I wish people understood](https://forum.livingwithpolyneuropathy.org/t/what-i-wish-people-understood/250)
**Author:** [@DocMac](https://forum.livingwithpolyneuropathy.org/u/DocMac)\ **Replies:** 23\ **Last updated:** [February 6, 2023, 2:28am UTC](https://forum.livingwithpolyneuropathy.org/t/what-i-wish-people-understood/250 "2023-02-06T02:28:04Z")
I will use every bit of my strength and determination to appear normal to you. I at be exhausted and weep later, but to you I look okay. Please don't forget about me. --- ## [But you don't look sick - Spoon theory](https://forum.livingwithpolyneuropathy.org/t/but-you-dont-look-sick-spoon-theory/5519)
**Author:** [@JusticeFlight](https://forum.livingwithpolyneuropathy.org/u/JusticeFlight)\ **Replies:** 4\ **Last updated:** [August 24, 2021, 3:24pm UTC](https://forum.livingwithpolyneuropathy.org/t/but-you-dont-look-sick-spoon-theory/5519 "2021-08-24T15:24:27Z")
We’ve ALL heard this one, “But you don’t look sick.” Most of the time, people don’t understand what we’re dealing with. Feel free to share this with them. Then, just tell them when you’re low on spoons, or out of them. I… --- ## [Like at the Edge of the Tallest Building](https://forum.livingwithpolyneuropathy.org/t/like-at-the-edge-of-the-tallest-building/5412)
**Author:** [@Cam](https://forum.livingwithpolyneuropathy.org/u/Cam)\ **Replies:** 12\ **Last updated:** [January 27, 2021, 5:16pm UTC](https://forum.livingwithpolyneuropathy.org/t/like-at-the-edge-of-the-tallest-building/5412 "2021-01-27T17:16:25Z")
It is like… Standing at the Edge of a High enough Building and Looking down at the Street. The grasp for air… Dizzy but can not move an inch. Legs like jelly… CIDP for years… Left untreated… Yes! I am one unfortunate… --- ## [Suffering with breathing problems - I know you all care](https://forum.livingwithpolyneuropathy.org/t/suffering-with-breathing-problems-i-know-you-all-care/3667)
**Author:** [@Jeanne](https://forum.livingwithpolyneuropathy.org/u/Jeanne)\ **Replies:** 23\ **Last updated:** [November 27, 2020, 5:48pm UTC](https://forum.livingwithpolyneuropathy.org/t/suffering-with-breathing-problems-i-know-you-all-care/3667 "2020-11-27T17:48:06Z")
Hi All, It’s been a frustrating few weeks, and today has been particularly bad. Never have your symptoms worsen near a holiday!!! Backstory- diagnosed with likely GBS 4 years ago. Very mild, no treatment, minor nerve d… --- ## [Crying Alone](https://forum.livingwithpolyneuropathy.org/t/crying-alone/3403)
**Author:** [@Cam](https://forum.livingwithpolyneuropathy.org/u/Cam)\ **Replies:** 22\ **Last updated:** [March 5, 2019, 2:39am UTC](https://forum.livingwithpolyneuropathy.org/t/crying-alone/3403 "2019-03-05T02:39:06Z")
\#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… --- ## [Dealing with the fear involved in the GBS journey](https://forum.livingwithpolyneuropathy.org/t/dealing-with-the-fear-involved-in-the-gbs-journey/2139)
**Author:** [@Beau1](https://forum.livingwithpolyneuropathy.org/u/Beau1)\ **Replies:** 34\ **Last updated:** [June 28, 2018, 7:43pm UTC](https://forum.livingwithpolyneuropathy.org/t/dealing-with-the-fear-involved-in-the-gbs-journey/2139 "2018-06-28T19:43:49Z")
Hi. I have just joined this forum and am lying in hospital in darwin australia. Diagnosis: GBS. This is my story: monday this week I noticed that I struggled to walk up the stairs.I thought it is something that will just… --- ## [How Can I Help?](https://forum.livingwithpolyneuropathy.org/t/how-can-i-help/2940)
**Author:** [@Emily87](https://forum.livingwithpolyneuropathy.org/u/Emily87)\ **Replies:** 4\ **Last updated:** [March 21, 2018, 5:02pm UTC](https://forum.livingwithpolyneuropathy.org/t/how-can-i-help/2940 "2018-03-21T17:02:18Z")
Hi all, I am not personally effected by CIDP, but my dad is. I am struggling to understand how I can provide support, emotionally or otherwise. He is very quiet and does not articulate what he's feeling/thinking/strugg… --- ## [When does it all stop?](https://forum.livingwithpolyneuropathy.org/t/when-does-it-all-stop/3261)
**Author:** [@Kris66](https://forum.livingwithpolyneuropathy.org/u/Kris66)\ **Replies:** 14\ **Last updated:** [December 26, 2017, 6:13pm UTC](https://forum.livingwithpolyneuropathy.org/t/when-does-it-all-stop/3261 "2017-12-26T18:13:57Z")
Being newly diagnosed with CIDP iam notmeven realllsure what it is, how it works, how it affects me, etc, my doctor walked into the room after all the tests and simply said you hav CIDP, I asked h if it was a misdiagnosi… --- ## [Will muscle twitching and leg fatigue ever go away?](https://forum.livingwithpolyneuropathy.org/t/will-muscle-twitching-and-leg-fatigue-ever-go-away/2162)
**Author:** [@Tarhealing](https://forum.livingwithpolyneuropathy.org/u/Tarhealing)\ **Replies:** 14\ **Last updated:** [November 20, 2017, 4:57am UTC](https://forum.livingwithpolyneuropathy.org/t/will-muscle-twitching-and-leg-fatigue-ever-go-away/2162 "2017-11-20T04:57:54Z")
Does anyone have increased muscle twitching and leg fatigue after running or doing physical activity during their recovery period? I have been running again and notice that my calves twitch more afterwards especially the… --- ## [CMT, genetic testing, my wife and potential kids?](https://forum.livingwithpolyneuropathy.org/t/cmt-genetic-testing-my-wife-and-potential-kids/3049)
**Author:** [@SubVet](https://forum.livingwithpolyneuropathy.org/u/SubVet)\ **Replies:** 2\ **Last updated:** [May 13, 2017, 4:46am UTC](https://forum.livingwithpolyneuropathy.org/t/cmt-genetic-testing-my-wife-and-potential-kids/3049 "2017-05-13T04:46:37Z")
I was diagnosed with CMT about a year and half ago while I was active duty Navy. Since then I've gotten engaged and we're getting married at the end of November(which I'm really excited for). The other day my fiancee and… --- ## [Sad](https://forum.livingwithpolyneuropathy.org/t/sad/1728)
**Author:** [@Solo\_Sapphire](https://forum.livingwithpolyneuropathy.org/u/Solo_Sapphire)\ **Replies:** 9\ **Last updated:** [January 1, 2017, 4:06am UTC](https://forum.livingwithpolyneuropathy.org/t/sad/1728 "2017-01-01T04:06:29Z")
I'm sad. So sad. Lonely and scared. --- ## [Crisis Help Line](https://forum.livingwithpolyneuropathy.org/t/crisis-help-line/2889)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 28, 2016, 4:40pm UTC](https://forum.livingwithpolyneuropathy.org/t/crisis-help-line/2889 "2016-12-28T16:40:48Z")
Are you in crisis, or maybe even feeling suicidal? Do need someone to listen and to support you right now? Take a deep breath, and find the helpline in your country: USA https://suicidepreventionlifeline.org/ Canada h… --- ## [Austin chronic pain support group](https://forum.livingwithpolyneuropathy.org/t/austin-chronic-pain-support-group/2630)
**Author:** [@Shannon\_G](https://forum.livingwithpolyneuropathy.org/u/Shannon_G)\ **Replies:** 0\ **Last updated:** [June 3, 2016, 3:01am UTC](https://forum.livingwithpolyneuropathy.org/t/austin-chronic-pain-support-group/2630 "2016-06-03T03:01:33Z")
I am starting an Austin based chronic pain support group. Our first meeting is on 6/9. Message me if you are interested in attending. I am affiliated with the American Chronic Pain Association and I have had GBS for 2 ye… --- ## [Problem working](https://forum.livingwithpolyneuropathy.org/t/problem-working/1020)
**Author:** [@Larry\_F](https://forum.livingwithpolyneuropathy.org/u/Larry_F)\ **Replies:** 7\ **Last updated:** [April 29, 2016, 3:38am UTC](https://forum.livingwithpolyneuropathy.org/t/problem-working/1020 "2016-04-29T03:38:19Z")
My wife has been amazing throughout this 9-year ordeal with CIDP. She slept on the floor next to me in the hospital for two months, and helps me at home a lot. We are both professors in our 60s at a university and have… --- ## [Can't deal with all the "miracle cures"](https://forum.livingwithpolyneuropathy.org/t/cant-deal-with-all-the-miracle-cures/968)
**Author:** [@Maggie3](https://forum.livingwithpolyneuropathy.org/u/Maggie3)\ **Replies:** 17\ **Last updated:** [April 20, 2016, 2:36am UTC](https://forum.livingwithpolyneuropathy.org/t/cant-deal-with-all-the-miracle-cures/968 "2016-04-20T02:36:39Z")
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. M… --- ## [Huge health change](https://forum.livingwithpolyneuropathy.org/t/huge-health-change/839)
**Author:** [@Rfisher7381](https://forum.livingwithpolyneuropathy.org/u/Rfisher7381)\ **Replies:** 28\ **Last updated:** [March 26, 2016, 3:26pm UTC](https://forum.livingwithpolyneuropathy.org/t/huge-health-change/839 "2016-03-26T15:26:27Z")
On January 2 2015 I was on vacation with my family in Tampa Florida when I became ill. On 1/2/15 a CT and MRI identified a tumor in my brain and I had surgery to remove it. A few days later they informed me that it is a … --- ## [Diagnosed Set 2015, out of hospital & physically growing stronger, but emotional wreck, anyone had the same & how did you resolve it? Also had 3x IVIG, how will I know if I need more?](https://forum.livingwithpolyneuropathy.org/t/diagnosed-set-2015-out-of-hospital-physically-growing-stronger-but-emotional-wreck-anyone-had-the-same-how-did-you-resolve-it-also-had-3x-ivig-how-will-i-know-if-i-need-more/1057)
**Author:** [@Karen\_H](https://forum.livingwithpolyneuropathy.org/u/Karen_H)\ **Replies:** 3\ **Last updated:** [March 26, 2016, 2:06pm UTC](https://forum.livingwithpolyneuropathy.org/t/diagnosed-set-2015-out-of-hospital-physically-growing-stronger-but-emotional-wreck-anyone-had-the-same-how-did-you-resolve-it-also-had-3x-ivig-how-will-i-know-if-i-need-more/1057 "2016-03-26T14:06:24Z")
Last August I could barely speak, walk, or stand, with chronic headaches, now stronger physically but still have headaches most days, plus emotionally I'm a wreck. I cry at anything that goes wrong, whether it's my inter… --- ## [This stuff sucks](https://forum.livingwithpolyneuropathy.org/t/this-stuff-sucks/2256)
**Author:** [@Tally](https://forum.livingwithpolyneuropathy.org/u/Tally)\ **Replies:** 12\ **Last updated:** [March 26, 2016, 12:00pm UTC](https://forum.livingwithpolyneuropathy.org/t/this-stuff-sucks/2256 "2016-03-26T12:00:59Z")
Its been a year may 5. Athem blue cross is horrible, the doctors I have seen 10 plus are horrible. It's bad enough to have GBS, but to not get any treatment at all. I have been told iam cured to why are you here, it's in… --- ## [Feeling sad and scared](https://forum.livingwithpolyneuropathy.org/t/feeling-sad-and-scared/2312)
**Author:** [@glightcap](https://forum.livingwithpolyneuropathy.org/u/glightcap)\ **Replies:** 3\ **Last updated:** [March 25, 2016, 5:25am UTC](https://forum.livingwithpolyneuropathy.org/t/feeling-sad-and-scared/2312 "2016-03-25T05:25:44Z")
I'm going to see my doctor tomorrow. My condition has deteriorated so much since the last time I saw him. I am using a walker now. My legs are numb from the knees down. Probably could be in a wheelchair. I think the 1st … --- ## [Sorry just venting , not really a discussion](https://forum.livingwithpolyneuropathy.org/t/sorry-just-venting-not-really-a-discussion/974)
**Author:** [@thunderpaws](https://forum.livingwithpolyneuropathy.org/u/thunderpaws)\ **Replies:** 3\ **Last updated:** [January 22, 2016, 2:14pm UTC](https://forum.livingwithpolyneuropathy.org/t/sorry-just-venting-not-really-a-discussion/974 "2016-01-22T14:14:56Z")
I'm sorry , but I belong to quite a few CIDP groups an all I read about is all the IVIG treatments people are going through and their problems ( I have also had reactions to ivig ) and also the use of prednisone, I do n… --- ## [Giving up](https://forum.livingwithpolyneuropathy.org/t/giving-up/1299)
**Author:** [@kraai](https://forum.livingwithpolyneuropathy.org/u/kraai)\ **Replies:** 1\ **Last updated:** [October 19, 2015, 3:19pm UTC](https://forum.livingwithpolyneuropathy.org/t/giving-up/1299 "2015-10-19T15:19:45Z")
hi every one last week was the lowest point in my life. i lost control and damaged my maraige even more than before. i cant accept hte fact that i am limited to do certain things. i cant take it anymore. i use to ride mo… --- ## [Attitude Adjustment](https://forum.livingwithpolyneuropathy.org/t/attitude-adjustment/306)
**Author:** [@Robert\_E](https://forum.livingwithpolyneuropathy.org/u/Robert_E)\ **Replies:** 28\ **Last updated:** [September 2, 2015, 6:34pm UTC](https://forum.livingwithpolyneuropathy.org/t/attitude-adjustment/306 "2015-09-02T18:34:54Z")
Before I came down with GBS/CIDP I thought I was a fairly positive, productive, reasonably successfully person. On Jan 23rd of 2012 I woke up with numb toes.I scheduled a visit to my family doctor and went to work. I fo… --- ## [Is it ok to take Lyrica for a prolonged period?](https://forum.livingwithpolyneuropathy.org/t/is-it-ok-to-take-lyrica-for-a-prolonged-period/2303)
**Author:** [@Mit](https://forum.livingwithpolyneuropathy.org/u/Mit)\ **Replies:** 1\ **Last updated:** [August 23, 2015, 1:21pm UTC](https://forum.livingwithpolyneuropathy.org/t/is-it-ok-to-take-lyrica-for-a-prolonged-period/2303 "2015-08-23T13:21:11Z")
I was diagnosed with GBS after a prolonged period of flu. I experienced paralysis in my legs two weeks into GBS. Medication followed. After three weeks, I was placed in rehabilitation. I think my slow but steady recovery… --- ## [Here to vent](https://forum.livingwithpolyneuropathy.org/t/here-to-vent/951)
**Author:** [@rocketsmoke](https://forum.livingwithpolyneuropathy.org/u/rocketsmoke)\ **Replies:** 1\ **Last updated:** [July 13, 2015, 2:18pm UTC](https://forum.livingwithpolyneuropathy.org/t/here-to-vent/951 "2015-07-13T14:18:02Z")
Hello all. I am here to vent momentarily. I have been waiting on my neuro-oncologist since the beginning of March to send my insurance company more information since my IVIG was denied at that time. I have been in const… --- ## [How To Let Go Of The Fear And Frustration?](https://forum.livingwithpolyneuropathy.org/t/how-to-let-go-of-the-fear-and-frustration/2221)
**Author:** [@BrokenBear](https://forum.livingwithpolyneuropathy.org/u/BrokenBear)\ **Replies:** 6\ **Last updated:** [April 27, 2015, 5:53pm UTC](https://forum.livingwithpolyneuropathy.org/t/how-to-let-go-of-the-fear-and-frustration/2221 "2015-04-27T17:53:53Z")
It's been 42 days since I was released. Last week I went on a trip to Cancun that was planned months before I got sick, and that was nonrefundable. My boyfriend and our two kids had been so excited about it for so long, … --- ## [Terrified and Losing Hope](https://forum.livingwithpolyneuropathy.org/t/terrified-and-losing-hope/852)
**Author:** [@Doggymama](https://forum.livingwithpolyneuropathy.org/u/Doggymama)\ **Replies:** 16\ **Last updated:** [March 19, 2015, 4:44am UTC](https://forum.livingwithpolyneuropathy.org/t/terrified-and-losing-hope/852 "2015-03-19T04:44:32Z")
I have had Crohns Disease for 30 years and CIDP for three. IVig helped me in the past but I have always had very serious side effects. In July, I had my gallbladder removed and then had IVig the same week. I was very ill… --- ## [Back & Forth](https://forum.livingwithpolyneuropathy.org/t/back-forth/862)
**Author:** [@Roy](https://forum.livingwithpolyneuropathy.org/u/Roy)\ **Replies:** 5\ **Last updated:** [March 11, 2015, 1:40am UTC](https://forum.livingwithpolyneuropathy.org/t/back-forth/862 "2015-03-11T01:40:19Z")
Please forgive me for not coming up with a better title but words escape me in trying to convey my feelings...I was diagnosed with CIDP in Nov. 2010. My Neurologist did not put me on IVIG due to the fact I have stage 3 … --- ## [This is getting so old](https://forum.livingwithpolyneuropathy.org/t/this-is-getting-so-old/2074)
**Author:** [@Lily](https://forum.livingwithpolyneuropathy.org/u/Lily)\ **Replies:** 18\ **Last updated:** [March 6, 2015, 5:45pm UTC](https://forum.livingwithpolyneuropathy.org/t/this-is-getting-so-old/2074 "2015-03-06T17:45:13Z")
I was just diagnosed 4 weeks ago, but I can't stand it much more. I wake up every morning in pain and am sorry to be awake. I want to be better. I don't have it as bad as many, but that doesn't make the pain go away. I'm… --- ## [It's been a rough night, I cant sleep](https://forum.livingwithpolyneuropathy.org/t/its-been-a-rough-night-i-cant-sleep/2149)
**Author:** [@Ivy](https://forum.livingwithpolyneuropathy.org/u/Ivy)\ **Replies:** 9\ **Last updated:** [February 24, 2015, 7:49pm UTC](https://forum.livingwithpolyneuropathy.org/t/its-been-a-rough-night-i-cant-sleep/2149 "2015-02-24T19:49:41Z")
My anxiety level is on overdrive and I feel like I can't breathe. I'm having a hard time swallowing. Has anyone else have had this problem, I'm exhausted, please advise. I'm driving my husband crazy. [Next page](https://forum.livingwithpolyneuropathy.org/c/support/28.md?page=1)