Hi all and thank you for accepting me to your group.
I had GBS back in 1997. I won't go into the full story of that here, but I will tell you that I thought of that period of my life done and over. My only reminders of that are the 'pins and needles' feeling that I have in my hands and feet, and a little numbness. I've learned to ignore it and MOST days I don't even think about it. It's just part of me.
This brings me to why I'm here.
This past Thursday, I noticed that I was getting that deep burning pain that I had forgotten about of the years. You probably know the one I'm talking about. It's deep, and you can't really pinpoint where exactly it's coming from. It's all over my body. My legs, my arms, my back. I can't lie in one position for more than a couple minutes, then I have to turn. Along with this came a fever. 101-103. This went on for a few days. No other symptoms. Did I go to the doctor? no. Last thing I needed was to hang there for awhile and to be told to go home and have a couple aspirin.
Sunday morning, I awoke to all of it disappearing. YEAH! I'm good to go.
Monday, I wake up to the deep pain again, and it's not gone away. I walk short distances and I have to stop and rest. I'm talking living room to bedroom. I'm so exhausted, I have to sit for five minutes and give everything a rest.
It never occurred to me that a relapse was possible. (of course, this is what I'm thinking..relapse)
Anyways, I'm wondering if anyone else out there has had that happen. Is this something that will just past quickly...I'm I just freaking myself out?
I'd go back to my neurologist that treated my GBS, but he's 2000 miles away. (This is what marriage and moving across the country will do to you)
Please go to your current doctor and get this checked out. It sure sounds like a relapse to me. It will be better to get checked and know for sure. If it is maybe they can give you IVIG and it will help to stop the progression, if it is truly a relapse. I am only 11months into my recovery but I remember the deep muscle pain and not being able to pin point were it is coming from. Good luck to you and many prayers are going your way. Dollywood
Valaveria - thank you for sharing your concern. I tend to agree with Dollywood, and your symptoms sound like mine, when I need an IVIG “booster”. While we all seem to have good and bad days, the deep pain that is difficult to pinpoint, along with weakness, that persists for more than a couple of days, are the signs that my new neuro (fired the first one) to prescribe another IVIG treatment. I’m only 8 months into recovery, but so far anyway, his treatment has been effective. I feel better within 48 hours, and my treatments are getting further apart each time.
One of the crazy things about GBS/CIDP is that no two cases are the same, and finding the right treatment regimen takes some dilligence. Maybe that’s why they call it “practicing” medicine. I’m fortunate to have found some one willing to “practice” on me!
Go to a neurologist, tell him/her about your GBS history, and say you suspect CIPD. He/she may not be very familiar with it, but they need to be. You need to catch it before it gets worse.
You better get yourself to the ER. Yes you could be having another bout of GBS
Things have changed a lot since 1997and they can diagnose you pretty quickly with blood work a and a spinal tap.
Good luck
Looks like I'm heading to urgent care directly after work today. My doctor is out of the office until Mid November. The office will not see me and has NO idea what GBS is, let alone the urgency of it.
Hubby is a little unsupportive at this time. He thinks I have normal flu like aches and pains, so he's dragging his heels even on the urgent care visit, but I'm insisting at this point.
So sorry to hear that your husband is being less than fully supportive. Please have him read some the responses on this forum to see that your symptoms are not regular flu-like symptoms. Get yourself taken care of, one way or another!
Its Your life. No one will ever SEE your burning pain. U have to go in to the ER and sound sure og two things… 1)they need to rule out a relapse by a spinal tap and 2) if you need either IVIg or plasma pheresi
I’m only 11 months into recovery, but I did notice when I go the flu a few month back my arms and legs burned again. It was similar to the normal ‘Aching muscles’ feeling you get with the flu, only it was the burning gas pain instead.
After I got better it went again, same as flu pains.
I’m hoping that you’ve just experienced similar due to a flu or viral illness
I think you should go to the doctor and tell him you had GBS and you think you are having a relapse. Maybe you aren't...could be something else, but in case it IS.....You should get it checked out.
I'll start off by saying I'm new to this support site as well. I had GBS 18 years ago. Was fully paralyzed with a breathing machine hooked up to me to keep me from dying. I was in the hospital for a year and another 6 months of physical therapy once I got out. I'm like you I have the pins and needles feelings in my hands and feet along with the numbness. But I also have muscle spasms in my legs, arms, and back. Along with a deep aching pain most days in my legs, arms, and back. Longer work days and more activity normally make it a little worse. Sometimes it wakes me up while I'm sleeping because the pain can get pretty intense. Sometimes it's not really an aching pain, but more feels like my muscle is just getting twisted and more twisted till I can't take it. I can cause it just by flexing my muscles, like my calves or biceps. So, with all that said. One thing I've learned from this site is everyone recovers similar but yet a little differently. Like me, I'm no relapsing, but they are things I just have to deal with on a daily basis. Good luck, hope that helps a little.
I am hoping that all is well with you. My daughter had GBS 4 months ago, and one thing that helped me tremendously was to establish a good relationship with a neurologist that will return my calls immediately. As you mentioned, going to a regular doctor is not going to help. I would recommend checking into the ER and overtime finding a neurologist that you can trust. Good luck!
It sounds like a relapse to me to.. I was good for alot of years, learning to live w/ the pins and needles all over. Then it got worse a few years ago. I'm now on regular medication. I think it;s all going to be stuck w/ me for the rest of my life!!!