AnonymousAugust 8, 2006 at 8:43 pm
I’ve read a lot of the discussion threads and it has helped in many ways. Here is my story: I was diagnosed with GBS on May 25, 2006 in Augusta, GA. Although I only had numbness in my hands and arms and weakness in my legs, they admitted me and I had multiple tests (EMG, spinal tap, MRI, CT, etc.) and quickly diagnosed GBS. Although I had only mild discomfort before being admitted to the hospital, that first night I experienced the worst pain that I’d ever had. I felt that my legs and arms were being boiled in oil. On May 26, they started the treatment. They gave me 5-6 doses of IVIG which I feel arrested the progression of the weakness/paralysis so that it stopped just above my waist. Within the first 3 days, I became progressively weak and finally was unable to walk/sit, etc. The paralysis lasted for just over 4 weeks; after I took my first step in the acute care hospital, they transferred me to a Rehabilitation Hospital where I had Physical Therapy and Occupational Therapy every day.
The pain has been sort of controlled; my feet and lower legs are still very tender and have burning pins/needles pain that breaks through several times a day. My question — for those who have had this kind of pain, how long does it last????
The MD said that as I increase my exercise in PT, the pain will decrease. I don’t quite understand this and I’ve been a nurse for over 20 years. Anybody have this happen???
My recovery is slow; the neurologist said yesterday that I will probably be able to drive in a month or two; he also said that I will probably recover at least 90% of my functioning, but it will take several months or perhaps a year.
Thanks to all who have provided their stories and information in this disucssion board. It really helps.
AnonymousAugust 8, 2006 at 9:05 pm
Its great news that you had IVIG treatment so early on, your doctors did a fantastic job in doing that.
Hmmm, now we get to pain. With each patient it is different .. 🙁 , many have months and months of pain, while others hardly have any at all (and there have been some who have said they havent suffered pain). I know that doesnt help much. But Im sure you will have tons of answers about pain.
Im not an expert on the subject, but I havent heard that as you increase the exercise, the pain will decrease. Maybe someone on the forum will put me right 😉 . I think that if you overdo the exercise the opposite may very well be true, and believe me, with gbs, it is extremely easy to overdo it. Your body at this point needs so much rest, and you know your body better than anyone else, so when it tells you to stop, you do need to listen – [I]if only it were[/I] a matter of keep pushing and work through it.
AnonymousAugust 8, 2006 at 10:38 pm
hi brenda & welcome,
alison has it right. although the recovery rate for gbsers is high no one knows how long nor to what degree any one gbser will recover. but plan on lots of recovery. gbs stands for Get Better Slowly. muscles need exercise. nerves need rest. you must find the right balance. to much exercise will slo your recovery & increase your bad symptoms. time & nerve healing, not exercise, is what makes the pain go away. in the meantime… many of us take neurontin, a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorbtion max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 9, 2006 at 8:56 am
Hai brenda…regarding the pain it is not the exercise wich releves…the pain killers do that……….alternately after the ivig u shoul train ur body to get the motions(body movements), for tha t what we want is PT(physio therapy) daily. If u feel that it strains on a perticular day u do it little not to avoid the habit. it is defenetly a good process and it heals the numbbed parts, and make u to stand and walk and do ur daily activities……..and finally don’t loose ur spirit…………god bless u.
AnonymousAugust 9, 2006 at 10:10 am
Hi Brenda, I am a gbs spouse, we are about 2 months ahead of you and my wife’s case sounds very simuliar to yours. I will chime in about PT and pain. Too much PT is probably bad, but the balance is the key. My wife had to relearn most of the things most of us non-GBS’ers take for granted like learn to walk again, with one lesson three times a week. Little things have to be relearned. Things like swinging your arms when you walk, and landing on your heels instead of flat footed. That is what the PT people are paid for. Of course being a nurse you know that if you don’t use it you loose it so you gotta’ do PT. Good luck on finding the balance, and yes neurontine does help.
AnonymousAugust 9, 2006 at 11:17 am
As Alison and others have expressed, excercise doesn’t decrease pain. Healing does. The meds mask it in between time. A patient has to except a certain amount of pain when entering the therapy phase. Unavoidable in my opinion. The more you excercise, expect more pain to come from it for awhile. I was on morphine feeling pretty good just before being hauled off to the gym for PT, and within minutes, pain was starting. That was my extream. What gets left out of the picture with neurologists and everyone really, is that GBS has some effect, no matter the mild to extream cases, on the fluid capsuals in every joint, every tendon in the body, as well as muscular nerve issues. To me, these are seperate areas of possable pain producers all wrapped up under one umbrella. As an example, if effected only up to the hips, and you’re past 3 months without having walked yet, it should be expected that hip joints and knee joints and ankle joints will produce pain due to pressure put on them, ie., the fluid shock absorbers aren’t quite healed either, and were effected to some degree. My extream would be a bone on bone feeling. Tendons have lost function during all this too, and some degree of plyability is lost. You see this in range tests and therapy drills. So, that puts a strain on the body, and now you get to the big one, nerve pain. Why some pain meds, in my opinion only now, don’t work for some. They are being treated for the wrong kind of pain under that big umbrella. I was on a huge dose of neurontin just like most in the beginning. Did a great job and I can’t speak highly enough on that drug. So good, I had no pain, and I had to get off it to see if real pain existed after time. Something my doc was aginst, but the only way to find out. I ended up having no pain. Nerve pain that is. Didn’t take but a push of my hospital bed button to raise me up, to find out pain still was hanging around though. Some of it was exciting the nerves, but most was coming from those other areas I mentioned. Took me about 3 years to find the right med to cover up those pains, with the smallest amount of side effects. As time heals, hopefully, so goes the pain. All you can do is get comfortable waiting it out. In my opinion, it’s importent in therapy to focus only on quality of function. Throw out the ‘style’ judging. In other words, a therapist says I must walk 10 feet further then last week to show an improvement. I say, I must walk the first 10 feet real good, before we move the bar up. Time and healing will get me distence, therapy won’t. This is where the fatigue aspect of GBS comes in, and isn’t very well understood. You need therapy to get you to functioning well, and staying inside your optimum working range will make energy last longer, and improve the quality of the tasks being done in therapy. It’s like, well, she can walk 10 feet great but she isn’t healed yet, but know she can walk 40 feet badly and unsafely, so she’s healed and improved enough to move on. Never made sence to me. As Alison and gene and others stated, it’s pace and amounts of what you are doing that brings out more pain. Increase the work out, and pain, sensations, numbness and most of all, fatigue, will increase with it. Thousands upon thousands before any of us, tried to beat GBS into submission, and if something worked for pain, like increasing excercise, I’m sure we’d all be on a program. I traded excercise and therapy 3 times a week for a full week’s worth of function and energy. After 3 years of therapy and being well schooled in a variety of techniques, which I apply to everyday functions. An extreme, but a choice I had to make. Hang in there and experiment around with what makes you feel the best, and the other areas will improve too. By the way, tell your neuro that a GBSer, who is an incomplete quadripligic with numbness and footdrop and much more to deal with, can drive just fine. Even retested by the state of Washington at my last renewal and passed with a 94. Who parallel parks these days anyway? Nice of him to decide when you can have your life back. 🙂 Take care and keep asking questions.
AnonymousAugust 10, 2006 at 11:19 pm
I wonder how many GBSer’s, especially those of us who have had a full blown case, totally paralyzed……spending over 100 days in the hospital, etc. recover 100%. I’m still waiting and wondering if my feet will stop tingling. It’s been since Dec of 2004 for me. I’m still dealing with tiredness too. I do work some, so that is good. I feel worse when I am dealing with an illness or infection. Maybe onset of age has to deal with the disease recovery also. Those of us who are older don’t recover as fast. Once a GBSer, always one I believe. My cousin had GBS 18 years ago and now he has CIPD. Do we ever get cured? Patience is the gift of this disease, eh.
AnonymousAugust 11, 2006 at 12:01 pm
My GBS was diagnosed April 15, so we’re probably sailing some of the same waters. 🙂
Very early on, I noticed that I could do things early in the morning that I couldn’t do later in the day. An example is lifting my right ring finger. Gradually, as the recovery proceeds, I’m able to lift that finger later and later in the day. For [I]my[/I] recovery, I was able to devise my one month rule: [i]If I can do an activity first thing thing in the morning, it’ll be about a month before I’m able to do it any old time of the day that I choose.[/i]
This shouldn’t be news to anyone, but I never see it mentioned here: a well rested muscle performs feats that a tired muscle can’t. And your muscles are always fresh after a good night’s sleep. That’s all my “one month” rule says. Your recovery may have a different time scale, but it’s always true that a well rested muscle will outperform a tired one. Take the time to discover your own rule.
My leg pains went away, not with exercise, but with stretching: everything in my legs had tightened up over just a couple of days of illness. I spent a month stretching out hamstrings, quads, calves, and heel tendons before the pain let up. My PTs were great with showing me how to stetch each muscle or tendon safely given that I could topple over in a light breeze when I first started. And I still have to stretch out my calves. Funny thing is that everyday I spend less time stretching them out in the morning: I anticipate that a few weeks from now I’ll just get up and there won’t be any pain in my calves. 🙂
AnonymousAugust 11, 2006 at 12:49 pm
Sounds like you’ve figured it out. To the contrary though, it’s been talked about here for years. Just not on this new format yet, if that’s what you are refering to? A lot of threads on energy management, and I have been personally professing for years that a day in the life of a GBSer should go from hard to light. Time will bring the strength around, and endurence, to do tasks longer and longer. Get the heavy lifting, or the most energy consumption chores done first, then by the end of the day, you’re lifting that glass of whatever in your lounge chair with no problem, instead of fumbling or struggleing, while resting. Same applies in therapies. Get the big energy stuff, like getting out of a wheelchair and standing, on the way to walking, done right out of the gate, then go to the gym matt and streatch out and limber up. Or do the light duty stuff. That keeps the quality level up because maximum energy is applied, and I don’t need all that for the light stuff. I’ve seen to many getting worked out, then fail at what they really want to see improve, like walking, due to a low tank of gas, in my opinion, and not much else. I’ve also said that GBS residuals, to different degrees now, get worse the more they are stimulated. Why I’ve said, the more I do a task over and over, the more disabled I become. I have been walking for years now unassisted, all day long. I can do short bursts and distances, but the chair is needed for long stuff, then once there, I can get up and walk around. I can also litterally get on my recumbent bike, and peddal for 15 minutes on setting 3, and induce a non-walking condition, which is quite a contrast. Takes me at least 3 hours before I can saftly walk across a room agin. Great job Olav. Keep up the good work and you’ll get there.
AnonymousAugust 11, 2006 at 1:49 pm
When I was diagnosed with GBS it was almost 5 years ago while I was pregant with my daughter. My systoms last for about one month. I had one night when they addmitted me into the hospital that was very hard. This was what my Dr. referred to as the rock bottom point. I could not breath on my own, my body would not move at all. I could not even close my eyes to sleep because the muscles in my eye lids were not working. They told me that it would take me two years to recover. But with the help of Jesus I recovered in 3 months. I still can not do certain things like whistle or wink my left eye. But to me I am 100% better, but I am still afraid to have another baby. Whatever you do don’t give up!!!
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