Am I alone?

I have found great peace with the support I have received from this GBS support group, thank you! I posted back around my one year (8/2014) anniversary of GBS and received great comfort from the replies I received. However I am in need of some more advise please! Like I had previously posted I am still having difficulties with the tingling, burning, etc… some of the pain and issues I’m having are difficult to explain to anyone and I feel like I’m crazy or it’s all in my mind. I walk fine but once I sit down the pain and exhaustion seem to kick my rear end. I have a lot of good days but I still also have a lot of bad days. I have been diagnosed with GBS, mild arthritis in feet, back and possibly my knees, fibromyalgia, also have been diagnosed with problems in my L3, L4/L5 which the doctors say isn’t bad enough to do surgery on because of the risk where it’s located. (Part of a piece of my bone is intruding on the nerves of my back. I have ask some of the doctors if one of the reasons they wouldn’t want to do surgery on back was due to me having GBS and he said yes. I feel as though with GBS that the doctors really are not fully aware of some of the issues associated with GBS. My neurologist has told me that after the one year mark that I was free of the GBS effects of my illnesses, but I still think I’m suffering from the issues with the effects of the GBS. I have not looked for work because I don’t feel like I would be able to sit or stand for any long lengths of time. I have filed for disability but was denined and about to begin the appeals process. Anyway I seem to be rambling but I would really like to hear others stories of how their lives have changed after GBS. This symptom (disease)has caused a great amount of stress on my marriage which was already had some issues prior to the GBS. I’m afraid it may end up badly. I’m scared to make any life changing decisions right now out of fear that I may make wrong decisions due to the meds I’m on. (Syntroid 75mcg 1 a day, lamotrigine 25mg 2x2 a day, nortriptyline hcl 10 mg 3 at bedtime,baclofen 10 mg 1x2 a day, meloxicam 7.5 mg 1 x a day,omperazole 1 a day and last lyrica 200 mg 1x2 a day). Has anyone else had a difficult time trying to get their spouse/significant other to understand the lasting effects of GBS? (Tried to explain the spoon theory but they really didn’t want to hear it or thought it was only about lupus and was more of an excuse for what I feel they thought was laziness.) Anyone else still suffering from exhaustion after normal day to day activities? Sometimes I just need to take it really easy and rest for days at a time and then I’m up for anything that I can still do but others see this as laziness or that I should be spending time exercising to make it better (which if I do it puts me out of functioning for a few days because of the pain and exhaustion). Please, please let me know if there is anyone else out there that didn’t have it really bad (put on ventalator)that is still having so much trouble even after a year. I have come a long way and really don’t like complaining about it but feel I have to constantly explain myself. I also (if you can’t tell (hahaha)) have trouble concentrating on things. AM I ALONE IN THIS AND JUST LOSING MY MIND. Last thing I want to say is that I know I have been blessed with how far I have come and I am very greatful to the Lord above for this and the many friends and families prayers for me!!!

Hi Deborah. I just saw your post. I am a rather newish member here. And I do not check in frequently. Anyway, I want to tell you that I relate to your fatigue issues and sympathize with you about the denial for disability. I am currently waiting for a disability decision, and I will be upset if I have to begin all over in an appeal. It is amazing, in my opinion, that you were denied. I am thinking that it hints at how little people in the health professions know about GBS and its various manifestations. I am grateful to have found this online support group. Which btw a doctor recommended I look for one!!
Anyway, I was a runner before my diagnosis in January 2014. I am 61 years old. And I have just gotten back to what most people would call a “jog.” And I will return to running I am sure. I really believe that the more exercise I do, the better I feel, the better my outlook, and the better my gait. I find that sitting causes me more pain and tingling than being up and around. I am very conscious of not overdoing it, but I feel that the more exercise I get, the more dramatic the improvements. All of my friends and family who saw me through this devastating diagnosis agree. I use the Runner’s World website for videos on exercising my legs and hips. Physical therapy was essential, but the time came when I developed my own plan. I hope this helps. My marriage is also not faring well, but it’s me. Not him.