Relapse vs patient declining in therapy

I am looking for some answers. My friend started therapy after IVIG treatment and was strong for about 2 days and then dropped like a rock. He declined in his therapy and was weaker than ever. He was diagnosed with a relapse and sent back to the hospital. This time he received plasma exchange.

He has finished that and is now back in therapy. He again started out strong and again is starting to decline in his progress. He did not drop like a rock this time but is declining on a more gradual basis.

My question is this: Is it possible that he is having another relapse OR is this the way a GBS patient does in therapy-----taking 2 steps forward and 8 back? Is this type of progress the nature of the disease?

Or once there is success/progress in therapy, does the progress usually continue?

We are worried about this and being newly diagnosed, we have no answers to so many questions. Advice and opinions and comments from long term recoveries would be appreciated. Thank you!

One of the things your friend needs to watch out for is over-doing it. It is very easy to push yourself too hard when you have GBS. GBS is NOT a no pain-no gain situation...if you push too hard, you have a very high chance of a back-slide. I'm not saying that your friend cannot be having a relapse, but it is important to know your limits and make sure the therapist understands that they cannot push a GBS patient like they would push a patient with an orthopedic condition.

Krysta!
thanks so much for your response and this is exactly what we read. We are having a hard time, though, coming to the point of knowing where the fine line is for pushing too hard or mot! I guess it all depends on the individual and knowing your own body! I suppose time will tell! Thank you!
Krysta said:

One of the things your friend needs to watch out for is over-doing it. It is very easy to push yourself too hard when you have GBS. GBS is NOT a no pain-no gain situation…if you push too hard, you have a very high chance of a back-slide. I’m not saying that your friend cannot be having a relapse, but it is important to know your limits and make sure the therapist understands that they cannot push a GBS patient like they would push a patient with an orthopedic condition.

It kind of sounds like your friend might have been started on physical therapy before he was ready/able to do it. It will be a real effort to do easy things at first (sitting up in bed, standing), but gradually it should get better. Hopefully the therapist is experienced with GBS patients. At this point, I don't think your friend should be doing more than an hour or two of physical therapy a day, and they should be spaced out in short increments with rest in between. (My opinion.)

Thank you, LanceB!!! I appreciate both your responses and, to be honest, have thought about the short increments myself! I wondered if an hour was just too long and if they could maybe do several 20 minute sessions during the day! He is exhausted and very weak; sounded so discouraged when I spoke to him last night! I will mention this to him today and see if he would like to get together with his therapist and discuss the increments.
The therapist IS familiar with GBS and said to my friend’s Dad that he thinks he will need therapy for 6 months to a year! My friend did not hear that! But, maybe if the sessions are shortened and spread out more, he will make a little more progress! I worry about the discouragement because I think that can affect his outlook and progress, too! Thank you for your response; it was very helpful!br/>
LanceB said:

It kind of sounds like your friend might have been started on physical therapy before he was ready/able to do it. It will be a real effort to do easy things at first (sitting up in bed, standing), but gradually it should get better. Hopefully the therapist is experienced with GBS patients. At this point, I don’t think your friend should be doing more than an hour or two of physical therapy a day, and they should be spaced out in short increments with rest in between. (My opinion.)

It is impossible to tell at this point how long recovery will take. The doctor once told my wife to prepare herself for the possibility that I would never walk again. (At my lowest point things looked pretty bad, and I had no response to nerve stimulus tests.) But I did get better after all. (See the video that I posted of me riding my unicycle. I posted it to show people that there is, in fact, life after GBS!) Have faith!

Cheers, LanceB

Talismank9s said:

Thank you, LanceB!!! I appreciate both your responses and, to be honest, have thought about the short increments myself! I wondered if an hour was just too long and if they could maybe do several 20 minute sessions during the day! He is exhausted and very weak; sounded so discouraged when I spoke to him last night! I will mention this to him today and see if he would like to get together with his therapist and discuss the increments.
The therapist IS familiar with GBS and said to my friend's Dad that he thinks he will need therapy for 6 months to a year! My friend did not hear that! But, maybe if the sessions are shortened and spread out more, he will make a little more progress! I worry about the discouragement because I think that can affect his outlook and progress, too! Thank you for your response; it was very helpful!br/>
LanceB said:

It kind of sounds like your friend might have been started on physical therapy before he was ready/able to do it. It will be a real effort to do easy things at first (sitting up in bed, standing), but gradually it should get better. Hopefully the therapist is experienced with GBS patients. At this point, I don't think your friend should be doing more than an hour or two of physical therapy a day, and they should be spaced out in short increments with rest in between. (My opinion.)

LanceB! Thank you for the encouragement but he is back in the hospital AGAIN! Each time he goes back, he is weaker and weaker! This is the third time! He is now kind of trapped in a bed! Hard to move, cannot lift his legs, could never get out on his own, etc., etc. it is very discouraging for him and I am worried about his state of mind! We are asking for psychological help! the Doctor still does not think he has CIDP but I am beginning to wonder. they will start him on the plasma exchange tomorrow, followed by possible IVIG and then booster IVIG on a yet to be determined consistent basis. the doc said it would take a long time to diagnose CIDP so they still think it is GBS and will just watch what happens when he goes back to Rehab. initially, he is pretty good when he starts rehab. He has been good after every treatment for about 3 days and then it is all down hill! Now, it is worse than ever! I am glad he is where he is and am anxious to sit down with the doctor and get a gazillion questions answered. He is also starting to have swallowing issues and it makes me scared for him! Thanks to you and anyone else who may have some words of wisdom! Any thoughts are welcome!
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LanceB said:

It is impossible to tell at this point how long recovery will take. The doctor once told my wife to prepare herself for the possibility that I would never walk again. (At my lowest point things looked pretty bad, and I had no response to nerve stimulus tests.) But I did get better after all. (See the video that I posted of me riding my unicycle. I posted it to show people that there is, in fact, life after GBS!) Have faith!

Cheers, LanceB

Talismank9s said:

Thank you, LanceB!!! I appreciate both your responses and, to be honest, have thought about the short increments myself! I wondered if an hour was just too long and if they could maybe do several 20 minute sessions during the day! He is exhausted and very weak; sounded so discouraged when I spoke to him last night! I will mention this to him today and see if he would like to get together with his therapist and discuss the increments.
The therapist IS familiar with GBS and said to my friend’s Dad that he thinks he will need therapy for 6 months to a year! My friend did not hear that! But, maybe if the sessions are shortened and spread out more, he will make a little more progress! I worry about the discouragement because I think that can affect his outlook and progress, too! Thank you for your response; it was very helpful!br/>
LanceB said:

It kind of sounds like your friend might have been started on physical therapy before he was ready/able to do it. It will be a real effort to do easy things at first (sitting up in bed, standing), but gradually it should get better. Hopefully the therapist is experienced with GBS patients. At this point, I don’t think your friend should be doing more than an hour or two of physical therapy a day, and they should be spaced out in short increments with rest in between. (My opinion.)

Talismank9s,

I don't know what your friend's initial condition was like, if it is better or worse now, but I can tell you that being "trapped" in a bed, and being unable to move the legs is not uncommon at all. In my own case, I walked into the doctor's office in the morning, with tingling hands and feet, and muscle weakness in my legs, and by the afternoon I couldn't stand on my own. It was downhill from there, until by about a week later I was completely paralyzed -- couldn't move a single muscle in my body. I honestly thought I was going to die right there, the only things that worked were my heart and brain. The ventilator kept me breathing. I don't say this to alarm or scare you, just to let you know that it is not uncommon with this illness. I didn't die after all, and eventually got better. Most people do. But it took a lot of time. I'm not familiar with the situation you describe of going "back and forth," but I'm sure there is a wide variety of experience. There's not much you can do other than be there to hold his/her hand and give moral support/prayers. I hope things improve soon!

cheers, LanceB

I myself take two steps forward and ten steps back, it really concerns me. No one has answers as to why. It’s been just under two years for me.

They say the typical recovery time is 3 to 5 years, so have patience. I'm about a year and a half, and my recovery has been pretty good, fortunately. I can walk and move around, and use the stairs, but my strength and endurance is still noticeably less then it was before the onset. We just have to have patience and keep working at it!

Good luck! LanceB

Gbsguy said:

I myself take two steps forward and ten steps back, it really concerns me. No one has answers as to why. It's been just under two years for me.

I am four months in to gbs and I am still experiencing some relaps. Extreme fatigue, motors kills, and unable to work very much at all. My doctor thinks I should be better, but I am still sick. Relaps may be that we are not completely over this illness in the first place. Hope things get better on your end!

It took me in 2006 five ivig treatments before I was even able to start therapy. I am fine now just a bit of palsey in my face but unnoticable. My advice about the relapse is maybe its just to soon for therapy.

Hi , I am about 4 1/2 years in to GBS . For me it has been a slow process . After I got out of the Hospital they started me in therapy , I made it for 4 days of one hour each and got sick and never went back. My advice is to make sure all your Doctors gp, neurologist, pain doctor all have experience with "GBS" If they have only read about it and never treated it, move on ! I was very lucky in that my GP's daughter has it. (go figure) and he was up on everything. got me all the right people . As of now I do three Min's on recumbent bike am & pm,sets my feet on fire . All my Doctors say the same thing "Don't push it" If your body says quit then you better quit .

Contact http://www.gbs-cidp.org/ and see if there is a chapter in your locality. When my husband was in the hospital I contacted the local chapter liaison and spoke with him about my husband's condition. Since GBS is relatively rare, it is possible that your physician does not have a lot of personal experience with the condition. You could ask for a second opinion. We live in a large urban area and the hospital where my husband was treated had a GBS patient about once a month--so the staff was pretty knowledgeable. If you live in a less populous area, the medical people might not have a lot of hands-on experience. I have heard of doctors doing video conferencing, so perhaps that might work--have a more experienced doctor observe and consult via video.

Greetings to all from Prescott Arizona!

I have been following this discussion with interest. I am very fortunate in that after a 5 week hospital stay and IVIG I was able to begin very limited PT and OT. Actually, the OT was much more helpful as it helped me to deal with everyday issues like getting dressed, shaving, brushing my teeth, etc. I can remember by first assisted shower seemed like an eternity and I was not able to do much; fortunately, a great tech did most of the scrubbing and drying off. It took me a very long time to be able to complete most of a shower under my own power.

After I was out of the hospital for a couple of months, I began a very limited physical therapy....mainly just limited stretching and walking. Fortunately, I was able to tolerate the mild exercise and it seemed to help in building endurance and motor skills.

Today, eight months later, I am able to hit a few golf balls and am completely off of the Fentanyl Patch and Gabopentin.

Sleepiness is still a major issue and I still sleep 12 to 14 hours a night and need to lay down during the day. It is not really fatigue, but "sleepiness".

I also have a little trouble taking a deep breath, eventhough I am off oxygen and my blood/O2 level is rising and is at about 94%. It is still very difficult to inhale if I am in a warm water therapy session and neck deep in water....the hydo pressure is still difficult for my diaphragm to overcome.

I go along with other comments about going very, very slowly with PT, especially since you are moving a lot of large muscles (legs) . Good Luck and Hang in There!

Bob

Tell him to listen to his body. That is the hardest lesson I’ve has to learn! It’s ok to be lazy!

this same thing happened to me. except they had started me on plasma exchange before i started therapy. started out strong and then after 3 or 4 days i felt myself getting weaker and weaker and less range of motion in my arms. believe me from a patients POV, its very frustrating. but after a couple weeks it started coming back slowly and then after a few months progress just skyrocketed. i sincerely hope for the best!!

Thanks so much to all for their responses over these past few months. Besides the initial diagnosis, my friend has had 2 relapses and is just now making progress. He has been diagnosed with CIDP but is doing very well—getting stronger and regaining many needed and appreciated activities. Still on some therapies for the the doctor and doing physical therapy , too, but we are grateful for his response. His doctor has been sooooo wonderful! More later and thanks, again, for all the support and encouragement!