rehab

scorpio,

UR right in not over taxing your body. your pt/ot person should be told that exercise is good for the muscles, but hampers nerve recovery. start work at only 4 hrs/day & get a note from your doc if necessary to limit your work inside the po bldg. take care. be well.

gene gbs 8-99
in numbers there is strength

[QUOTE=scorpio42]I I’m worried that I won’t be able to do what is expected of me regarding my therapy, and “heal” as fast as what my disability company wants me too! I’m a letter carrier in Ontario, Canada, and with such physical work, I’m scared to death to go back and not be able to perform my daily duties and then look after my apartment and daily activities.
Is there anybody out there the same as me?[/QUOTE]

Yes, there are a lot people that are in similar situations. Just browse through the posting. Your are not alone!

You have to remember that most of the health care people you dealing with have no idea what is really best for your recovery. Nerve damage takes time to heal. You need to exercises, but in moderation. Forget the “no pain -no gain mentality. It doesn’t apply to nerve damage and might even slow your recovery. If you haven’t already register with this Form to receive their newsletter, I would defiantly recommend you do so.

If you belong to a union, I would recommend contacting who ever is suppose to be looking out for the member’s health issues and find out what avenues are open to you. But you will need to do some research and document what the problem is and what the recommend solutions are. Assume they know nothing about you illness and attempt to explain it using authoritative sites.

Good Luck! You will be in my prayers.

Jim C

[QUOTE=scorpio42]I was diagnosed April 6, 2006, and hospitalized on the 7th. I just started to lose the use of my legs, but my respitory was not affected, thank God!
I was only in the hospital for 5 days, and was sent home to take care of myself. I live alone, and it’s been a hard road.
I just started rehab, on the 11th of Dec. and I go 3 days a week for 2 hours a day. My strenghth isn’t bad, and my energy is ok for that day, but the next day I’m so tired that I’m on the couch for the whole day. The physiotherapist wanted me to come in every day for 3 hours after my 2nd week, but I have told them no, I can’t cope with my rehab and then do what I have to do at home! I see a shrink every 2 weeks, cause I’m having such a hard time emotionally, and I’m worried that I won’t be able to do what is expected of me regarding my therapy, and “heal” as fast as what my disability company wants me too! I’m a letter carrier in Ontario, Canada, and with such physical work, I’m scared to death to go back and not be able to perform my daily duties and then look after my apartment and daily activities.
Is there anybody out there the same as me?[/QUOTE]

I would say to cut the rehab to about 20 minutes every other day and just work on range of motion and no heavy work. I was dx in april o6 and have worked in a pool for one hour twice a week and some light exercise at home. I pushed it at first and did more damage then good. Its a learn as you go thing and also how to balance your medication. I have found Icy-hot extra strength works on my foot pain. Recovery is so slow so do not expect to wake up and be over this thing in a day or week or month. I am 8 months in and slowly doing better and expect to get over this thing.

Darlene.

Welcome and glad you found us. There is no way for you to be able to “rush” back to your job. I hope they understand if you try and come back too early it could set you back and have you off work even longer. Take care and get lots of rest, keep coming back here your part of the family now 🙂

Jerimy

Here is a link to a page on this website it talks about fatigue.
[url]http://www.gbs-cidp.org/newsletters/2004spring.htm[/url]
Here is the post.

Guillain-Barré Syndrome is a disorder whose excellent prognosis is invariably emphasized. It is widely accepted that Guillain-Barré Syndrome has an excellent prognosis with 75%-85% of patients making a complete recovery. However, many of my patients have complained to me of persistent symptoms that continue for years after the initial paralytic event and that significantly detract from the quality of life. The most prominent of these symptoms is fatigue. I have made no systematic study of the
proportion of patients with residual fatigue but it is certainly more than the 15%-25% that the figures in the literature suggest. Most studies of the ultimate outcome in GBS are based on telephone interviews or retrospective chart reviews and seemingly minor complaints may have been missed or disregarded. For example, patients are often asked if they have returned to their previous work or other previous activities but they may not have been asked whether they have more difficulty performing their former activities. Very few studies have focused on residual effects. In one small study from Australia, Dr. J. McLeod and his colleagues (J. Neurol Sci 1976; 27:438- 443) examined 18 recovered GBS patients and found that half of them had objective residual neurological abnormalities. Even then these residual abnormalities were considered to be significant in only four patients. Fatigue in this group of patients was not mentioned. In another study Burrows and Cuetter (1990) reported on four patients who had made an apparently complete recovery in terms of muscle strength and yet had longstanding residual loss of stamina. They were all armed forces personnel who had been assessed using the Army Physical Fitness Test (APFT), a quantitative measure of neuromuscular endurance, prior to their illness. Each suffered from GBS of moderate severity and each was judged to have made a full recovery in terms of muscle strength assessed during neurological examination. However, the APFT had not returned to the former level 1.2-4 years after the acute illness. A recent important paper from Dr. I.S.J. Merkies and colleagues in Holland (Neurology 1999; 53:1648-1654) has established that residual effects from GBS are much more common than has been generally reposed and that seemingly minor neurologic abnormalities may still result in annoying disabilities. The study used a validated index of fatigue severity to assess residual disability. It included 83 patients who had suffered from GBS an average of five years previously. About 80% of these patients experienced fatigue that was considered severe enough to interfere with their life despite the fad that the majority had normal strength or only minor weakness. They noted also that the fatigue did not seem to improve over time; the fatigue index score was the same in patients in whom many years had elapsed as it was in patients whose acute illness had occurred only 6-12 months previously. This paper provides sound scientific support for the validity of the observations of my patients who regularly complain of fatigue even when they have returned to all or most of their former activities and who are working full time at their former jobs. Although their strength maybe normal when they are examined in the doctor’s office they are clearly unable to sustain the same level of physical activity that they had performed prior to their GBS.

Although it is my impression that residual fatigue is much more common than has been generally appreciated I am surprised by the numbers reported by the researchers from the Netherlands. I, therefore, feel that it is important to try to reproduce these results and I am currently planning a study of residual fatigue in GBS patients. I will use the same fatigue index that was used by the Dutch group as well as other measures of overall quality of life. More research is also needed to discover an effective treatment for this residual fatigue. A number of physical and pharmacological strategies have been shown to be effective in patients with multiple sclerosis, another neurological disorder in which fatigue is a major cause of disability. We need to take a leaf from their book and try some of these same strategies in GBS patients with residual fatigue.

Sue

[QUOTE=suewatters1]Here is a link to a page on this website it talks about fatigue. [url]http://www.gbs-cidp.org/newsletters/2004spring.htm[/url]

I will use the same fatigue index that was used by the Dutch group as well as other measures of overall quality of life.

Sue[/QUOTE]

Sue, do you know the fatigue index mentioned? Where can I find it?

Sorry Ninus I don’t know it was just part of the article. Maybe there is a way to search for it on the internet.

Sue

An abstract of the Dutch study is available at:

w w w.neurology.org/cgi/content/abstract/53/8/1648
[b]Fatigue in immune-mediated polyneuropathies[/b]
[SIZE=”1″]I. S. J. Merkies, MD, P. I. M. Schmitz, PhD, J. P. A. Samijn, MD, F. G. A. van der Meché, MD, PhD, P. A. van Doorn, MD, PhD[/SIZE]

It uses the “Fatigue Severity Scale (FSS)”

A quick Google turned up several links of interest:

Fact sheet:
w w w.cephalon.com/newsroom/assets/FSS_Fact_Sheet.pdf

Sample questionnaire:
w w w.mult-sclerosis.org/fatigueseverityscale.html