pain & fatigue explained by dr. parry
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May 8, 2006 at 4:43 pm
starting to rebuild our database with what i have on my hard drive. naturally the url reference is now void.
gene gbs 8-99
in numbers there is strength[url]http://www.guillain-barre.com/forums/showthread.php?s=&threadid=4503[/url]
GBS Newsletter – The Communicator Spring 2003
Residual Effects Following Guillain-Barre
Gareth J. Parry, MD Professor of Neurology, University Of MinnesotaGuillain-Barre syndrome is a disorder whose excellent prognosis is invariably emphasized. Widely accepted figures suggest that 75%-85% of patient make a complete recovery. However, many of my patients have complained to me of minor but annoying persistent symptoms continuing for years after the initial paralytic event. Although I have made no systematic study of the proportion of patients with these residual complaints it is certainly more than the 15%-25% that the figures in the literature would suggest. The great majority of 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. Thus, 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. A note of caution was sounded in one small study from Dr. J. McLeod and his colleagues in Australia (J. Neurol Sci 1976; 27:438-443) who objectively evaluated a small group of 18 recovered GBS patients and found that half of them had objective residual neurological abnormalities. Even then the residual abnormalities were considered to be significant in only four patients. A recent important paper from Dr. I.S.J. Merkies and colleagues in Holland (Neurology 1999; 53:16481654) 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. 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 fact 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 may be 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.
A second under-appreciated symptom that may persist for many years is pain. Certainly, severe disabling pain is very rare. However, a number of my patients complain of persistent discomfort in their feet. The discomfort may take the form of annoying paresthesias (tingling) or there may be a vague aching discomfort. Occasionally there is more severe burning or stabbing pain. The symptoms have the same characteristics as typical neuropathic pain in that they tend to be worse in the evening or at night and are particularly annoying following days during which the patients have been up on their feet a lot. The discomfort is not particularly responsive to analgesics but usually does respond to antiepileptic drugs such as gabapentin, or antidepressant drugs such as amitriptyline, drugs typically used in the treatment of neuropathic pain. However, these medications have to be taken on a daily basis to be effective and one problem with deciding whether to treat this residual symptom is that the discomfort is usually rather mild. Thus, patients may be daily irritated by their symptom but be reluctant to take a drug every day for a symptom that significantly bothers them only once or twice a month. I have seen no mention in the medical literature of this phenomenon. It is possible that I see a highly selected group of patients in my practice who had initially been more severely affected and that the prevalence of this annoying residual symptom is much higher in my patients than in the usual population of recovered GBS patients. I would be most interested to learn whether the group of patients reported by Merkies and colleagues also suffered from minor persistent discomfort.
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 and in some patients it is severe. 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. -
May 8, 2006 at 6:16 pm
Dear Gene:
Thanks for reprinting this post. You really did a good thing in having it on hand. Who thought the old forum wouldn’t be around forever? You are looking pretty smart right now. It looks like a lot of people are motivated and capable of replacing the best of the old forum. This rebuilding effort may actually turn out to be a good thing.
Lee
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May 8, 2006 at 6:31 pm
Thank You Geno, you done good Pal.What would we do without you and al the info you probaly have saved.:) 🙂 🙂 🙂
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May 8, 2006 at 6:37 pm
I have saved one thread on CIDP which is a 17 page long word document… It has posts by Doc David, Marc Muirhead, Dick S, etc…and ends with one from a newbie in the Falkland Islands who said whe was the only person in her country who had CIDP… The posts are dated from June 2005 when it “died” to January 2006 when another newbie “resurected” it… I copied and pasted it into word and sent it to my daughter who is an RN… It seems to be about the early detection of CIDP and about remissions and relapse… I found that it had such a wealth of information that I wanted to keep it where I could refer to it at any time…
I wonder if could add it as a file attachment somehow…???
Aimee
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May 8, 2006 at 6:46 pm
aimee,
i just checked – while in word if you click on edit, select all, copy, multiple pages will copy. you can then put it all on a new thread you start here in one paste instruction.lee & brandy, thx! as always just trying to give back all i received here when i was new, ignorant, & scared.
take care. be well.
gene gbs 8-99
in numbers there is strength -
May 8, 2006 at 7:10 pm
The text that you have entered is too long (37958 characters). Please shorten it to 10000 characters long.
Any suggestions..??? I can break it down maybe into 3 or 4 sections…
Aimee
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May 8, 2006 at 7:11 pm
aimee,
breaking it down seems like the way to go. take care. be well.
gene gbs 8-99
in numbers there is strength -
June 2, 2006 at 10:40 pm
Thanks Gene,
I was looking for this article earlier this week and here it is! What a blessing.
I see my Dr. in two weeks and am trying to compile any articles I can find on Residual effects of GBS. I found a 2004 article from the New Zealand Nurses Organization that explained much of what I have been living with for the last
2+ years. Seeing in print what I could not explain or have not had explained to me is a help. It has also turned my hope for a recovery of who I once was and what I could once do into despair. How hard it all is to live with at times. Even harder to explain to those who see you outwardly as who you once were. Those who know us best can see the pain and fatigue in our eyes and faces.
May the word be spread that not all can resume full and productive lives. I too believed when I was told I would recover. Do they not know, or will they not tell us?
Take Care,
Bonnie:cool: -
June 3, 2006 at 12:17 pm
hi bonnie,
i suspect some of each. take care. be well.
gene gbs 8-99
in numbers there is strength -
June 5, 2006 at 10:53 am
Thanks for the article. It is extremely difficult to define each patient’s recovery and experience. I still have a lot of pain and fatigue as my residual problem. Some days I feel almost human and can do lots of things; others are just too much for me. Exercise, emotions and the weather seem to be important factors that influence my well being.
We are often defined as having “chronic fatigue syndrome” because it is much too difficult to explain to others what we are feeling. I look very “robust” and healthy if anyone were to look at me, but once I start walking or stumbling and dragging my feet, people notice that I have a problem. I consider it my “job” to deal with these issues by spending my time trying to maintain a balanced life. When I get tired, I am way too sensitive and people seem to attack me more. Maybe they notice how vulnerable I am when I can barely move…who knows?
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July 13, 2006 at 6:38 pm
bringing this to top for kyliz.
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July 13, 2006 at 8:49 pm
Thank you, Gene. It helps to read this article again.
Regards,
Marge -
August 24, 2006 at 6:34 am
m,
i see we looked at this a month ago. take care. be well.
gene gbs 8-99
in numbers there is strength -
August 24, 2006 at 7:47 am
Thanks, Gene. My short-term memory loss sometimes blanks out necessary data. Printing it out for new internist.
Regards,
Marge -
August 24, 2006 at 10:07 am
Gene, everytime I read this it seems I’ve forgotten something.
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August 24, 2006 at 12:49 pm
Hadn’t seen this article before today, this is great. I’m still early in my recovery but its great to see this. All the articles I have read to date talk about how most people have a complete recovery, although most of the people I talk to that have had GBS or know someone who has had GBS talk about how they still fatigue, etc easily. I will definatly be bringing this to my Dr next week when I go.
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August 27, 2006 at 12:09 am
Doby,
Isn’t it frustrating when most articles say about most having a full recovery. Reading peoples posts on this forum tells the truth that most have some long term residuals.
Debbie
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August 27, 2006 at 8:23 am
Hi Gene -I wanna thank you for re-posting this article too!
It made me realize, among other things, that I might have more in common with the GBS’ers than I thought. I’ve allways seen my PDN as a sort of further evolvement of CIDP, because of its slow and cronically deteriorating character, but now I’m in the Getting Better Slowly cathegory too, in fact!:DAs far as I know there is no medical cure for CIDP because the real cause of this disease is unfortunately still rather a mystery. In my case, however, they could tell what was wrong, and there happened to be a probable cure for my condition. My Rituxan treatment in the spring of 2005 arrested the development of my nerve-damage, and remyelination started. My motoric skills have become so much better since then, and the pain is more managable, and I don’t tire so easily. But of course I’m still impatient to be pain-free and as “quick on my toes” as I used to, which makes me over-do things, and then – well, I guess you all know!
Dr. Parry’s explanation will make it easier for me to understand – and thereby accept – why I still suffer as much pain as I do, even if it’s waxing and waning according to my stress-level and the weather-condition, and why I cannot run around with my friends for a whole day. I suffer from typical GBS residuals whether I like it or not.
Like CIDP in sickness and GBS in health!
What an epiphany I just had, Gene!:cool: Really wonderful to reach this conclusion here and now! Thanx again, pal! -
September 2, 2006 at 11:28 pm
trish,
am also bringing it up top cuz links no longer work. i remember a mother saying gbs pain is worse than child birth. print the parry article out for your doc. take care. be well.
gene gbs 8-99
in numbers there is strength -
September 3, 2006 at 12:44 pm
Gene,
Thanks for bringing this back up. I’ve found that a copy of this article is some of my best ammuntion when discussing my post GBS pain and fatigue with uninformed medical professionals.
I also have give copies to my family and friends to help them understand why I may look normal, but cannot do many of the things I used to due prior to my illness.
Suzanne aka SuzyQ
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September 5, 2006 at 2:18 pm
I recalled that Dr Parry’s fatigue article is on the Swedish GBS Support Group’s site. There is a news [nyheter] section. Here is the link out of curiosity.
[url]http://www.gbssverige.com/?DocumentIDNews=6&intShow=newsall[/url]
:p -
November 17, 2006 at 11:33 pm
hi kelly & welcome,
here is the pain & fatigue thread. read the 1st post. take care. be well.
gene gbs 8-99
in numbers there is strength -
November 19, 2006 at 8:08 pm
Thank you so much for posting Dr. Parry’s article. I was recently finally diagnosed with a mild case of GBS (that started late July, 2006). The docs say I am recovered, but even though my strength is back, I am still experiencing periods of profound weakness and buzzing & twitching in my legs and feet. I look fine, but I do not yet feel 100% recovered. It is reassuring to know that I am not alone — many, many gbs’ers apparently experience these same things! Hopefully, these residuals will continue to improve, but if not, I know that they are probably “normal” for my diagnosis.
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November 19, 2006 at 9:17 pm
Iowagal
Glad to have you on board! You know I really believe that the phrase “mild” GBS is an oxymoron – but of course I know why its defined like that;) . It devastates regardless of it being mild or severe, and have noticed that there seems to be a few of us who have been fully paralyzed and trached and have recovered quicker initially than some who have had a ‘milder’ case – just an observation mind you. However those same few are suffering some decades later 🙁 .
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November 19, 2006 at 10:34 pm
Welcome Iowagal, we are glad that you found us. Make yourself at home 🙂
Jerimy
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November 20, 2006 at 9:41 am
ditto ali. take care. be well.
gene gbs 8-99
in numbers there is strength -
November 20, 2006 at 4:36 pm
I can really relate to Jan as most of us can. People look at you and think you’re perfectly healthy, but as she said those closest to us know. Some days I get so tired that my eyeballs feel like they are going to suck back into my head. I had full course of GBS in 2001 and was vented.As the years have gone by, I seem to get worse than better. No energy, after about an hour until I rest awhile, numb feet when walking, and tingling of nerves in my legs is mostly constant some times it feels like something is crawling in my face and my legs in particular. Particularly after stress. Others don’t seem to understand how emotional stress and other things as you said, weather can bring you down so quick. I was talking with a nurse the other day and telling her about my experiences with GBS and she had nursed Gbs patients before. She said that there are 10% of GBS patients that never recover. I said I had not fully recovered because of all the recurrent symptoms. She said “I mean those that are still vented”. She had a patient 12 years old that is now 16 and still vented. I felt blessed to have the symptoms I complain about daily and started counting my blessing of how much I can do, walk a little, swim a little, enjoy my family if not too much work involved, and do life on a limited amount of energy vs. this 16 year old child who has been like this for 4 years. My prayers are with her.
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December 24, 2006 at 9:56 am
for mike. take care. be well.
gene gbs 8-99
in numbers there is strength -
April 15, 2007 at 9:07 am
tim,
print first post on this thread for whomever needs to understand your fatigue. take care. be well.
gene gbs 8-99
in numbers there is strength -
April 15, 2007 at 9:20 am
also for morwenna
take care. be well.
gene gbs 8-99
in numbers there is strength -
April 15, 2007 at 11:15 am
What a great thread. Thanks, Gene, for starting it. Chrissy had sent me the same article a while back. I’ve copied it and given it to my primary care Doc as well as my physiotherapists. It was appreciated on both ends.
Bonnie, well said. I realize it is necessary to hear plenty of positive feedback when we each start this difficult journey of diagnosis and hospital stays, but I’ve always felt almost cheated that I was told there would be full recovery. Our friends and family want to hear those words as much as we do at the time…but we are left holding the bag and trying to understand and explain, years later, when we haven’t made that “full recovery” and may look as though we did.
It’s always reassuring to come here and know there are friends who do understand.
Thanks to everybody who contributes, especially those “senior members” who hold such a wealth of information and understanding.
JayDee -
April 17, 2007 at 11:29 pm
Thanks for the article. Wow… that helps!
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April 22, 2007 at 9:29 pm
for ajr. take care. be well.
gene gbs 8-99
in numbers there is strength -
May 3, 2007 at 9:28 pm
for jill. read first post on this thread.
gene
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May 4, 2007 at 3:00 am
Tonight I was thinking about my residual fatigue and foot pain now 18 months out from acute GBS. Reading Dr. Perry’s article has made me feel better–at least I’m not the only person who continues with these symptoms
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