22 years post-GBS and feeling a bit desperate sometimes
AnonymousOctober 4, 2006 at 11:09 am
Reading the posts on this forum has been a great help to me, but somehow I have always been a bit nervous about telling my own story. But the truth is I feel very alone in my battle against my handicap and I need your support.
I had GBS in 1984, when I was 9 years old. I will try to summarize what happened in the following 22 years. I can’t really remember very well what happened in the onset of my illness. I only know I suddenly was in hospital looking through a window at my parents and sister waving at me before I fell asleep. I was paralyzed from the neck down and I think I could only move my head a little. That must have been very frightening but all I can remember is that I just wanted to go home.
After two months I was released from hospital. In the following years I have been treated by a paediatrician who always thought I could do better, even when I was in pain and extremely tired, and who wanted me to go horseback riding and do all sorts of sports and activities to make me stronger. My physiotherapist fully agreed with him and every time I tried to make clear I couldn’t go any further she pushed me to do so anyway. I also had a neurologist, who was mainly interested in the psychological side of my illness, and when I was absolutely exhausted he thought I was in denial about my handicap and therefore couldn’t adapt to the situation very well. After every EMG-test, which hurt terribly, it was made clear to me that the results shouldn’t hold me back to live a normal life (whatever that means). In the meantime I had to wear all sorts of splints, I had various surgeries on my feet, I had to walk with crutches and use a wheelchair, and I was always tired and I was always in pain. But after a while I really believed it was all in my head and I made myself do things which where very bad for me, like riding on a very heavy tricycle to school for almost an hour every day (yes, we Dutch(wo)man sure do love riding our bikes!).
In hindsight I really don’t know how I managed to finish school, let alone graduate from university. Yes, sometimes it became too much and at one time my back hurt so bad the doctors decided it was best to have me hospitalised. I lay flat on my back for a whole month. That didn’t help.
All these years I have overdone it, to put it mildly, and now I have to pay the prize. Five years ago I really noticed my energy going down rapidly and the pain increased. I had started working on a dissertation at university (I was so proud I had achieved this!), but only to sit in the library behind a book would hurt my neck so much I couldn’t concentrate. Typing became a problem too. After years of struggling alone I asked my GP for help and he sent me to a rehabilitation centre. There I met a physiotherapist who told me I probably would have serious damage to my joints due to inflammation and should have my knees replaced in a few years. That really scared me and I asked the rehabilitation specialist if this could be confirmed by taking x-rays, but only after a lot of persuasion the pictures were made and the specialist said I had the bones of an eighteen year-old so I should go ahead and live a normal life (where did I hear this before?). In the meantime I did learn to slow down a bit, learned some exercises for relaxation and after (again) a lot of persuasion got a new wheelchair and other aids. But no-one ever spoke of GBS or the fact that my nerve-system is messed up; that was all in the past and I merely had some lingering symptoms. I ‘just’ had to find a balance by either listening to signals in my body or ignoring them; I should relax my muscles or train them (they thought it was a muscle-problem), and then they sent me away to ‘live a normal life’.
The next year I had my gallbladder removed and after that it all went downward. After the operation I was in so much pain I couldn’t sleep. I literally tried to get back on my feet but all the symptoms I had in the past twenty-odd years had become worse. I couldn’t use my crutches because of the pain in my arms, I couldn’t type, I couldn’t drive my car, I could do hardly anything.
It has been almost four years now since all this happened. I lost my job, moved to another city to live closer to family and friends who will be there for me, tried to make all kinds of adjustments in my life to make things better. I rest a lot now and try to listen to my body, but although I am very pleased with my new home and enjoy the little things that still make life worthwhile sometimes, the fatigue and pain never go away.
By now I hear all of you screaming ‘Neurontin! Neurontin!’. Yes, that is my hope now. I tried all kinds of medications in the past years, like amitryptiline and morphine-patches, and every time I tried something new I suffered more or less severely from side-effects and they didn’t work for the pain. Now I am on Lyrica, the advanced form of Neurontin, as the doctors told me. I know of the (small) risks of getting GBS but I am willing to try everything by now. The small doses of 75 mg a day already makes me dizzy and even more tired than I am normally. I have more pain, probably because I am not feeling well. But it has only been a week since I’m on it, so you can’t notice a difference for the better already. If it’s not going to work I will try Neurontin, and if that won’t work I’ll keep trying other things.
I sometimes worry if it will ever get better. And there are also some symptoms which the doctors keep ignoring and which make me scared. The pain is always burning in my neck, arms and hands, in my back and in my legs, but sometimes it pops up in other places. Once I had so much stomach-pain I thought I had an ulcer, but when they looked inside my stomach there was nothing wrong. Since my gallbladder was removed I have a ‘patch’ on my left thigh which tingles, at times feels numb and even stings sometimes. For three months now I have double vision in my right eye which presumably is a little irregularity in the eyeball, but I just can’t seem to get used to my new glasses. My vision stays restless and I have so much pain in the eye muscles and the right side of my head. My optician says it is very strange that my eyes do not adapt to the new situation and don’t learn to work together again. Another worry are these hallucinations I have almost every month since I was about twelve years old, which occur about two to twenty times a day for a about week. For a minute I feel very, very scared (as if someone is going to attack me), I have deja-vu-like thoughts, get a bitter taste in my mouth and feel like I am going to die, basically. Most of the time no one around me notices anything and I am certainly not going to mention anything. Only a few people know about them, and I have only recently told them because the attacks appear more frequently and when they go away I can’t just go on with things like I used to.
Maybe all these things have nothing to do with GBS, maybe they have. No doctor has ever given me some answers. When I show them my list of symptoms they usually sigh, test the strength of my muscles by letting me press my arms, legs, hands and so on against their hands (which hurts) and say something vague about learning to live with my disability.
Finally I will get an MRI of my brain now, although my neurologist doesn’t see the point. And maybe he is right, I really don’t know any more. I am relieved something is done and at the same time scared, because I have to lie very still in a confined area for a long time and I know it will hurt.
As I said: I need some support. What I really want to know is if any of the symptoms I have mentioned sound familiar to others. It took me a week to finish this rather long story, but I am glad to get it off my chest. I hope I didn’t make to many linguistic blunders! Next time I will maybe try a more ‘gene-like’ approach: short but adequate!
AnonymousOctober 4, 2006 at 12:43 pm
I certainly dont have any answers for you, but I do empathize. This forum has been great for me, as I have found answers here and support from people that I have never met in person.
When I broke my neck in 2000, I too had a morphine patch (actually fentanyl, brand name Duragesic). It was HORRID. Never again. But doctors also tried many different approaches for pain, especially after I rebroke my neck in 2001 (yikes) and had a great deal of scarring and nerve damage from that injury.
For what it is worth, I went on to learn to walk and even run again (had to prove the Neurosurgeon wrong by running a marathon even). This certainly didnt happen overnight … it took me 3 years to turn my life back to the positive. Luckily, I was able to get back into shape, get back into working (luckily, after three tries, I now love my career path), go back to church (a turning point for me), and even get married, and now have a toddler around the house.
All this to say, a few years ago, I thought my life was worthless. I can’t say what did it, but things definitely turned around for me. My point is that, 6 years ago, I thought my life was over, but instead it was just beginning. I simply couldnt see the light at the end of the tunnel.
My luck, I “caught” GBS in 2006, very mild, and have struggled again through additional nerve damage, pain, and fatigue. But, no matter what happens, I know that there is a light at the end of some tunnel. Heck, I have no idea where that tunnel is or in what direction it leads, but I know that it is out-there, somewhere, and I just have to find it. Even in our darkest hours there is always hope. Please believe that.
The people on this forum are amazing, and have a wealth of knowledge. I, too, cannot take Neurontin as I am allergic to it in some manner. But there are other things I have found to help with nerve pain (Bio-Freeze on the skin reduces pain substantially for about 30 minutes during flare-ups).
Hang in there, and know that you have a whole gang of people here who support you and understand much of what you are going through.
Wishing you the very best,
AnonymousOctober 4, 2006 at 2:41 pm
I am so glad you shared your story. Isnt it just wonderful to know that there are people out here, on the forum, who just know what you are feeling and want to reach out and say they care? It is such a comfort knowing that at times.
Eva, I dont have the terrible pain that you seem to be going through. Mine comes when Im doing physical things, like walking, or using my hands. My body pain is kept at bay by Cymbalta at the moment, and my fatigue is a little better after taking Provigil. Onset of my GBS was in 1984 at the age of 18, with total paralysis and trach. I was lucky because I didnt have bad residuals, mainly fatigue that plagued my life. Just a few years ago, having thought and accepted that I had recovered from GBS, I started the downhill slide, and it is extremely hard for me to come to terms with.
I empathyize with you when it comes to being pushed so hard without understanding, and the doctors thinking you can do better. How I wish sometimes they knew the damage they were doing, both physically as well as mentally.
I am positive you have read this, as I always seem to post it, but just once again so that you can read the reference to post-GBS. It is from a paper by [I]Kleopas A. Kleopa, M.D., Neuromuscular Fellow Mark J. Brown, M.D., Professor Department of Neurology, University of Pennsylvania
School of Medicine, Philadelphia, PA[/I]
However, many decades after GBS, recovered muscles once weakened by the disease may again grow weak. This is a slow process that occurs over years, and may at first escape the patient’s notice. It is likely that this delayed weakness is the effect of the normal gradual age-related nerve cell loss on muscles that have a reduced reserve nerve supply from earlier GBS. The same phenomenon has been observed after poliomyelitis (“post-polio syndrome”) and other forms of acute nerve injury. The incidence of slowly progressive late weakness in GBS is unknown, but it is rare. When it does occur, the patient’s physician must recognize that the new weakness of seemingly recovered muscles does not necessarily indicate a second attack of GBS.
For many patients recovering from GBS, residual motor or sensory deficits may be only one aspect of the long consequences of the disease. Other issues described here may have a considerable impact on their quality of life[/QUOTE]
I also copied this by [I]Gareth J. Parry Consultant Neurologist Auckland Hospital, Professor of Neurology University of Minnesota[/I]
…. some explaining about the sprouting of the nerves.
[QUOTE] The basis for both of these seemingly minor residual symptoms (fatigue and pain) is probably axonal degeneration. During the acute illness the predominant underlying pathology in most patients is segmental demyelination, a completely reversible phenomenon. However, some degree of axonal degeneration is almost invariable. As recovery occurs function is restored by a number of mechanisms. Axonal regeneration of motor axons probably plays very little role in restoration of function except in the more severe cases. Rather, surviving axons send out small branches called collateral sprouts that restore the nerve supply to those muscle fibers whose nerves have been damaged. This process of collateral sprouting is very effective at restoring strength to a muscle but the efficiency of the muscle suffers – the muscle must work harder to achieve its goals. Thus, fatigue may result even when there appears to be full restoration of strength. On the sensory side, even a small number of damaged sensory axons may be sufficient to generate spontaneous discharges that are registered as pain or discomfort.
It is entirely appropriate that the good outcome of GBS should be emphasized during the acute illness. During this time, the patient is losing control of many motor functions, sometimes including life preserving functions, and constant reassurance from the attending physicians plays a vital role in the recovery process. However, it is equally important to be aware that residual problems are experienced by “recovered” GBS patients. Acknowledgement that such residual problems exist will go a long way towards helping patients deal with the frustration of their incomplete recovery.
More research is needed to discover an effective treatment for the residual fatigue. In addition, since these persistent symptoms are probably related to the degree of axonal damage that occurs at the time of the initial attack, we also need to continue to strive for earlier and more effective treatment of the acute stage of the disease so that these residual problems are minimized.[FONT=Times New Roman][SIZE=3] [/SIZE][/FONT][/QUOTE]It is important to note, that Dr. Parry mentions Dr. Merkies in the same paper, here is what he said.
A recent important paper from [B]Dr. I.S.J. Merkies and colleagues in Holland[/B] (Neurology 1999; 53:1648-1654) has established that residual effects from both GBS and CIDP are much more common than has been generally reported and that seemingly minor neurologic abnormalities may still result in annoying disabilities.
As you can see, Dr. Merkies is from Holland – wonder how easy it would be to get in to see him?
I for one would be interested in taking part in some clinical trial to try and find out exactly what is going on in my body right now, like so many other patients decades later.
AnonymousOctober 4, 2006 at 2:46 pm
These are links to the articles I was referencing. If you copy and paste them into your web browser, you should be able to read them. Once again, I know that most people have seen these, but its just easier to have them here instead of trying to go and find them.
AnonymousOctober 4, 2006 at 4:56 pm
I, like Ali, had GBS as a teenager and many years ago. Also have expereinced residuals in varying degrees, but never really associated them with GBS until the last year or so. Or if I did it was not cognitive. Just thought I had bad feet, bad hands, bad knees, bad hips and bad neck and I would live with it and move on. Also, since GBS I experienced pretty severe what I called “panic attacks” that like you were associated with a bad taste in mouth and feeling like I was going to die, my heart racing, feeling like I could not breathe. When I was in my thirties, they started getting in the way of my life so I started journaling about them, writing down what I was doing, thinking or feeling before they became bad. I started seeing a pattern in that I would have been in close situation ( I was in an iron lung for 6 weeks at my worst with GBS, and am very claustrophobic), had my hands or feet fall asleep, started a med that slowed me or speed me up. Once I saw the patterns, I realized my brain was acting on reflex with the panic attack and if I was able to be cognizant of it in advance I could breathe through it and it would not be so bad. Mind you, I figured this out on my own because I was embarrassed after several trips to ER and Docs and being told there was nothing wrong but a panic attack.
I was able then to associate most of the reasons back to fears that I had when I was at my worst with GBS. I felt that I needed to work through them as I had problems with any of the drugs that they give you slowing me down and causing more problems in my mind.
It is strange how the brain works to protect us but sometimes if does misfire.
I am not sure you have the same issue as me, but I would investigate. Since you were so young and forgive but did they induce coma? You said you went to sleep? Do you have any memories from that period that you can associate a panic experience now with?
Also you said that the doctors in your early recovery pushed you to do more beyond your level or threshhold of pain or discomfort. Do you think that has any bearing on your residuals being worse now. There is some documentation that says that those of us who pushed and wanted to please so wroked harder and through severe pain may have more degeneration of those nerves now later in life.
I agree with Ali that you need to find a Doc who is willing to understand your problems and a) THEY ARE REAL! b) They are probably related to GBS
c) And you are serious about getting answers.
We will pray for you in your struggles and LIFT YOU UP!
AnonymousOctober 4, 2006 at 5:46 pm
I just wanted to say welcome. I admire your strength and determination to get as far as you have, in spite of your Doctors. I agree that if possible you should see a new Dr., preferably someone who can work with you and give you the meds and assistive devices you need. You mentioned that you felt dizzy and tired from the Lyrica, I also had those reactions at first, but am now doing fine on it. Hang in there and we are glad that you found us.
AnonymousOctober 4, 2006 at 6:03 pm
Thank you for telling us your story. It helps to understand what you have been and are going through.
GBS has so many strange side effects, and are so often different with each individual, that it becomes hard to seperate out which problems are GBS related and and which are not.
Joining this forum is a great way to learn about things that others have experienced. It helps us to distiguish between GBS residuals and other problems.
Because GBS effects the nerves, it can cause such a variety of residuals. Most doctors are not familiar with GBS, let alone all of it’s manifestations. I believe they get frustrated with trying to diagnose problems without being able to put them into the context of this disease.
I do hope the Lyrica works for you. If not, keep searching, and keep coming back here.
You can count on our support.
Best wishes, Suzanne
AnonymousOctober 4, 2006 at 8:44 pm
you are an amazing person to have acomplished all you have while dealing with this horrible illness. it’s so hard to function on a day to day basis dealing with the ungodly agony, fatige, weakness, etc. and no one can possibly understand what you’re feeling. well, now you’ve found us and we can certainly sympathize with everything you’re going through. i know i feel like a whole new person thanks to all of you on this website. it’s comforting to know that there are many of us who truly feel your pain. i hope your medication works for you and keep getting 2nd, 3rd, 4th opinions. whatever it takes ’til you find a doctor who is willing to listen to you and find you some relief. my prayers are with you.
AnonymousOctober 5, 2006 at 5:40 am
Thank you all so much for your wonderfull replies. I almost can’t believe you are really responding to me. After all this time just reading the stories on this forum (which was a big help in itself) it suddenly hit me you can be here for me to. It almost makes me cry!
After your replies there is a lot to think about and I will get back to you about your suggestions and questions, but I must stop typing now.
AnonymousOctober 5, 2006 at 10:51 am
Thank you for sharing your story. I think many of us can relate to what you are going through. It is difficult to identify what are residuals and what might be something else. Although I haven’t dealt with GBS residuals for a great length of time (my diagnosis was fairly recent), I truely sympathize with what you are going through. It may be that you have several different things going on at the same time which is making it more difficult for your doctors to identify the actual causes. I can say that I also had extreme and terrible pain when sitting for any length of time…and my doctor initially said it was unrelated. I found that I had to insist that it was a problem and not something in my “head”. I had massive pain with GBS which popped up randomly and without warning in various parts of my body. This made many of my doctors think that I was “imagining the problems” and “panicking” and having “anxiety attacks”.
I tried several pain meds but experienced allergic reactions to everything but Lyrica. I can tell you that early on Lyrica also made me dizzy and extra tired. After about 6-8 weeks those sysmptoms settled down and it usually doesn’t bother me anymore…but for my part I will take those problems over the intense pain that I get without it.
Let us know how things are going for you and feel free to vent…I did… and it really helps to talk with people who have been – or are – where you are right now.
AnonymousOctober 6, 2006 at 6:55 am
Natalie, your description of panic attacks sounds familiar. A neurologist mentioned epilepsy a few years back. I don’t know, but it could be these two things are related. Apart from the anxiety I have hallucinations. They are dejavu-like thoughts that seem very important and I feel as if I have a great but frightening insight in my destiny, or in what makes the world go round. When the attack is gone I can’t remember a thing. I have tried to write some of it down, but when I succeed I end up with things like ‘must feed the cat’ or ‘oranges’ and I feel a bit cheated: this can’t be right, where’s the big revelation? I can’t tell people what is happening during an attack because I can’t speak properly: if I say something I don’t understand my own words.
I also have been trying to figure out the causes of my attacks and find ways to reduce them, all on my own like you Natalie. I can relate to your (and Kathryn’s) experiences about seeking help with doctors about this. It is so hard to explain what is going, but most doctors seem to draw their conclusions very quickly and make you feel you are overreacting. I found out simple things like mental leaps, light flashes or suddenly seeing things in the corner of my eye can trigger an attack. I do not hyperventilate, I think, but it does help to keep breathing and just go with the flow.
Maybe these attacks are caused by heavy fits I had during the time I had pneumonia when I was nine months old, but the reason I think it might be related to GBS is because I have hot and cold flashes in all the painful parts of my body, the spot on my thigh begins to sting and I have these electrical tinglings and a feeling of extreme weakness along my spine. Can anyone make sense of this? By the way, Natalie, I don’t think I was in a coma when GBS had hit me, just sleeping of pure exhaustion.
It is so frustrating. As with other symptoms of GBS, the attacks are very real to me, but I can’t fully explain them and people don’t notice anything about me apart from me being a bit absent-minded or becoming quiet suddenly.
Alison, I have read the papers you mention, but it does help reading the excerpts you quoted. I overlooked the part about Dr Merkies. I will consider trying to contact him, but I also want to make sure I take one step at a time. First concern now is to get used to the lyrica, and maybe even begin to feel the benefits of it!
AnonymousOctober 9, 2006 at 1:46 pm
i have given the epilepsy/anxiety-thing some thought and i think i can answer my own question. anxiety: is explained by natalie. hallucination: maybe caused by feverish convulsions (i looked this one up in my dictionnary) in the past, but reading the forum i realize it is not uncommon with gbs-patients (although at the outset of the illness). increasing pain: anxiety/stress can do that.
so, for now i think this makes sense and i hope i feel the same during a day with multiple attacks, and i don’t start thinking again i have something in my head or i will go mad.
i cancelled the mri, also because i can’t bear the thought of lying still in this tube with all the pain i am in now.
AnonymousOctober 9, 2006 at 10:18 pm
many of us take neurontin [gabapentin], 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.
gene gbs 8-99
in numbers there is strength
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