"Residuals": Regional CO chapter annual meeting
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May 4, 2008 at 9:14 pm
On May 3 the regional Colorado GBS/CIDP chapter held its annual meeting in Denver. There were about 20 participants. Jeff Raff, who is also a member of this forum, gave a very informative talk entitled “Dealing with Residuals.” Carol and I were able to attend a meeting of this kind for the very first time and we both learned quite a lot about GBS. She took a few pictures I’m posting below since we got permission to do so from the participants. She originally planned to write a synopsis of the presentation for the German GBS/CIDP forum for me to translate (her fingers working better than mine) but we both thought Jeff’s talk was helpful and important enough to share here. I didn’t think of asking Jeff about this and hope he does not mind. If Carol made any big blunders or miss-statements, Jeff, please do add your comments.
[IMG]http://www.ourbluemarble.us/forum/ColoradoMeet.jpg[/IMG]
[IMG]http://www.ourbluemarble.us/forum/Jeff.jpg[/IMG][QUOTE][CENTER][B]Synopsis of a Presentation by Jeffrey Raff, Ph.D. on
Coping with Residual Symptoms of GBS[/B][/CENTER]Following his own GBS crisis three years ago, Dr. Jeffrey A. Raff was told by his doctor that a quick, full recovery was likely. Much to his dismay, he continued to experience pain and debilitating fatigue that persist even today. Troubled by these unanticipated problems, Dr. Raff drew on his professional background in research to conduct a personally motivated review of research literature on the subject of residual GBS. To his surprise, he learned that residuals are far more the norm than the exception for most GBS patients, a fact often overlooked or minimized by medical professionals.
Based on an overview of recent medical research, Dr. Raff learned that, however brief or long term they may be, well over 80% of GBS patients report residual symptoms, most notably, ongoing fatigue that continues to interfere with basic activities of daily living. Individuals with a more sudden and severe onset tend to report more problems with residual symptoms in recovery. Additionally, some who experience no symptoms following a GBS crisis can suddenly develop residual symptoms after as long as ten, twenty, even thirty years. Based on Raff’s review of research, he identified seven residuals most common to GBS patients:
[LIST=1]
[*][B]Fatigue [/B]- an energy-sapping, debilitating exhaustion that goes far beyond feelings of simply being tired.
[*][B]Pain [/B]– in many forms, each requiring different types of intervention, including sharp, stabbing, aching, cramping, and burning sensations.
[*][B]Fatigue-ability [/B]- defined as the length of recovery time needed following physical or mental exertion in order to engage in the same level of exertion again.
[*][B]Depression [/B]– from grief over loss of abilities and social contact to mental malaise, traumatic dreams and/or recall of hospital experiences (not unlike symptoms of post-traumatic stress disorder).
[*][B]Sexual Dysfunction [/B]– often presenting as erectile dysfunction in men and as sensory loss in women.
[*][B]Cognitive Dysfunction [/B]– difficulty remembering, difficulty with concentration.
[*][B]Dysautonomia [/B]– a heart problem caused by a malfunction of the autonomic nervous system that includes postural orthostatic tachycardia syndrome (POTS), a reduction in the ability of the heart and circulatory system to compensate for changes in posture, causing dizziness or syncope fainting when one stands suddenly or a “racing” heart.
[/LIST]Based on his own experiences and those of others, Raff recognizes how easily GBS patients can be dissuaded from seeking help by ill-informed medical professionals who have little knowledge of or clinical experience with GBS patients experiencing residual symptoms. To counter this, he encourages patients with ongoing pain, fatigue, and other symptoms to use the following guidelines:
[LIST=1]
[*][B]Find the “right” doctor [/B]– avoid those who think your problems are all in your head, who say they cannot help you, who recommend that you see a psychiatrist, who fail to listen, who lecture, or who encourage you to just push yourself through the pain.
[*][B]Get support [/B]– find family members, friends, or people in a support group who will allow you to be honest about your struggles.
[*][B]Be aware of your own symptoms [/B]– pay attention to when symptoms begin, how long they last, under what conditions they occur; try to describe each, including its intensity; note how the symptom impacts your ability to function; put this in writing and take it with to your doctor.
[*][B]Be patient with yourself [/B]
[*][B]Try to avoid acting out denial [/B]about your symptoms by refusing to ask for help when you need help.
[*][B]Try to find meaning [/B]in the experience you are having. How is this experience helping you to see what is important and what is unimportant in your life?
[*]And finally, [B]identify ways to live that give you a sense of passion about your life[/B]. Find activities you can do or causes you can get involved with and that you feel passionate about.
[/LIST]Dr. Raff encourages us to be our own best advocates by paying attention to what we experience and need, by seeking out help, by avoiding pressure to give up on treatment options, and by communicating clearly about what we need and want from our medical providers.
[/QUOTE][I]This article is a summary of the presentation given at the 7th Annual Regional Meeting for Colorado, Nebraska, Wyoming of the GBS/CIDP Foundation International that was held on Saturday, the 3rd.of May 2008 in Denver, Colorado, written by Carol Hoffmann, wife and caregiver for her husband, Norbert Hoffmann, who was diagnosed with CIDP with AntiMAG IgM in 2005.
Dr. Raff is a psychologist who has been in private practice for over thirty years and is the author of four books, among them [B]The Wedding of Sophia [/B]and [B]Jung & the Alchemical Imagination.[/B] He completed his doctoral work at Union Graduate School, New York (1978). He is a certified Jungian Analyst from the C.G. Jung Institute, Zurich (1976), and a GBS survivor. At the regional meeting, Dr. Raff spoke on the residual symptoms of GBS.
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May 4, 2008 at 9:49 pm
Norb,
Thank you so very much for posting this! Everytime someone voices and reinforces what a lot of us know and live through, I feel like crying with relief. One would think that being a liaison I would be able to at least find a doc. who fully understands, but unfortunately I dont, and on my good days do go into denial as well. I live the circle of denial, anger, depression and finally acceptance over and over again. It is very difficult to accept the way our bodies are reacting so many decades later when there are many people out there, including those who have suffered from GBS that dont believe what some go through as ‘real’.
You made my night Norb.
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May 4, 2008 at 11:47 pm
More complete notes from Jeff’s talk, web references and complete copies of relevant articles have just been posted at the Colorado GBS/CIDP website (not connected with GBSFI) at “http://www.coloradogbscidp.org/id2.html”
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May 5, 2008 at 12:03 am
[B][I]Coping with Residual Symptoms of GBS
#7. Dysautonomia – a heart problem caused by a malfunction of the autonomic nervous system that includes postural orthostatic tachycardia syndrome (POTS), a reduction in the ability of the heart and circulatory system to compensate for changes in posture, causing dizziness or syncope fainting when one stands suddenly or a “racing” heart.[/I][/B]
Can this happen if you have CIDP??
I am going through this right now and I am very scared. Last month I had angioplasty…main LAD was 80% blocked now 10% blocked but I have 5 other blockages about 40%. This is the second time I had angioplasty. I had it 10 years ago main LAD 90% blocked. I am 42 years old!!!
The racing heart, high pulse is scaring me to the point I am not doing anything! Afraid to walk or exercise. Newly diagnosed Type 2 Diabetic as well!
Been to both family Doc and Heart Doc, but when I go blood pressure and heart rate are fine!
Thinking about monitoring heart rate and journalling it to show the doctors.
Is there anything that can help the racing heart?
I have already increased meds.
Thanks
Rhonda from Canada -
May 5, 2008 at 1:05 am
Hi
It sounds as though you are going thru a very tough time at the moment; I am sorry. It is very difficult to keep going when its just one thing after another. I am not a doctor, but I have one or two thoughts about this…I could be totally on the wrong track, but it might give you another thread for questioning…
1. I wonder whether the racing heart is simply a symptom of your other issues, such as the Diabetes or the blockages – perhaps your heart is not getting the blood flow it needs and the electrics (which manage the heart beat) are playing up? How long does the racing heart last?
2. Could it be anxiety about your current situation that is causing the heart beat changes? That is a very common symptom of anxiety.
3. I was diagnosed as a child with PAT – paroxsysmal atrial tachycardia after a virus (not unlike CIDP!) This is a syndrome that is caused by misfiring of the electrical signal that manages your heart rate — it behaves as though you are in a “fight or flight” situation, even when you are not. The adrenelin runs through your system, and the heart rate does not slow down once the adrenelin is gone. The racing heart can last up to 24 hours (which is what used to happen to me). It used to go very fast – up to 200 beats a minute – it felt like “fluttering”. The doctors said as an adult it is typically made worse by hormonal changes – such as pregnancy or menopause. My first problem with PAT was in puberty.
Anyway – the medication I was on was digitalis and propranolol – which is a betablocker. It blocks the flow of adrenelin in your body – keeping the racing heart away. The propranolol also keeps you more relaxed – but not out of it. Students were using it to be less stressed at exam time. I don’t know whether that might be of use to you?
That is my two cents worth – I hope that you are able to get things under control soon so that you are able to enjoy the springtime.
take care
Debs -
May 5, 2008 at 9:40 am
Norb-thank you so very very much for posting this. Tears stung my eyes reading it. Looking at the photos were incredible. I have never met another GBSer in person. Dr Raff is a God-send. Maybe there is hope for us after-all.
Alma
GBS-MFv 1993 and 2004
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May 5, 2008 at 11:13 am
[QUOTE=Alma]Norb-thank you so very very much for posting this. Tears stung my eyes reading it. Looking at the photos were incredible. I have never met another GBSer in person. Dr Raff is a God-send. Maybe there is hope for us after-all.
GBS-MFv 1993 and 2004[/QUOTE]Alma, I’m glad my post was helpful. It sounds like you feel really alone with this problem. It really helps me to stay connected with others with the same disease. I met with another CIDP sufferer who lives in a city nearby. I visited him at the local hospital while he was getting IVIG and he came to see me months later at the same hospital after I had an operation. This year it has become much more difficult since I now have to rely on a power chair instead of a rollator. Going places has become almost impossible until we finally got a wheelchair accessible car a few weeks ago. Going to the GBS/CIDP meeting in Denver two days ago was my first major excursion.
Perhaps you could modify your profile and indicate where you live so it shows up on each of your posts. You also could ask on this forum if there’s anybody in your area.
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May 5, 2008 at 1:21 pm
Norb, ditto on the appreciation for sharing Dr, Raff’s thoughts. As has been said before, it really helps when our thoughts and the way we are feeling are put into words. Knowing we aren’t the only one feeling this way is so beneficial. After 3 years of digging for a neurologist that knows something about this I have an appointment at the University of Wis. hosp. in Madison.
It’s a drive for us, but if it means answers and understanding it will be worth it.
I think I’ll print out your copy from Dr. Raff at the Col. meeting and send it to the Neurologist I’ll be seeing. Is that legal to copy this?
Thanks again for your post,
JayDee -
May 5, 2008 at 3:11 pm
JayDee,
what I posted is just a summary my wife wrote from her own personal notes she took during the presentation. There is no problem with printing it out and sending it to your neurologist. -
May 5, 2008 at 3:55 pm
Thanks Norb. I took your suggestion and updated my usuer profile so that now everyone can see I live at Lake Eufaula in southeast Oklahoma. It is a very rural setting – far from everything. We moved here in 2002 from Oklahoma City – this is a very popular retirement destination. However – it is a 2 1/2 hour drive to OKC and the hospitals and Drs. that are necessary for anyone who has a serious problem (like GBS for a second time!) I do get around on my own 2 feet – although a little shakey. But I only drive here on my rural roads for short distances. Thanks for your in-put, to me. I just looked in the mirror. Yep – I guess I am a little transparent. The friends I am making here are just the BEST.
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May 5, 2008 at 5:29 pm
Wow Alma,
My mother-in-law lives in Grove, OK and we used to live in Tulsa. In fact, my wife was born in Stillwater and still has cousins in OK.
Our son went to scout camp near Lake Eufaula when he was young and Carol always talked about Turner Falls area.
There are two GBS/CIDP support persons listed in Oklahoma with the foundation, both in Tulsa.
One is Kimberli Gray at 918-494-9985. Her email is [email]kimberli.gray@sjmc.org[/email].
The other contact is Sue Gerkin at 918-742-0672. These are people wi the Oklahoma GBS/CIDP Chapter. They may send out newsletters and have information on meetings.
Take care
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May 6, 2008 at 7:38 am
Thank you so much for this wonderful information. I acquired GBS on 10/15/08 via a flu shot that I rec’d on 10/12/08. I also had a doctor that told me recovery would be quick and complete. I am back to work 5 weeks now after being off 5 1/2 months. Yes, to look at me I am fine….but the fatigue is there! I keep saying to my husband – you know I’m tired, you know I want to do what we planned earlier in the day, but now I can’t, etc… he’s very supportive of me — but I still feel the need to ‘prove’ to everyone that GBS is still a HUGE part of me. I printed out the wonderful synopsis — thank you so much — and gave it to my supervisor and asked that he put it in my employee file. I also gave one to coworkers. Every time I read something in this forum I feel so blessed to know that someone UNDERSTANDS what I am going thru. Thank you, again. GBS = Getting Better Slowly — is there a bumper sticker?? LOL 😉
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May 6, 2008 at 8:02 am
Victoria, there isn’t a bumper sticker, but there is a magnetic ribbon. Go to the GBS/CIDP home page and click on Web Store. Then on “shop”
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May 7, 2008 at 10:20 am
🙂 Wow! This world just keeps getting smaller and smaller!
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May 18, 2008 at 9:48 am
Hi All:Thanks Victoria-glad it was helpful. A number of people have asked if they can make copies of the talk to distribute to friends and family and I only wanted to say that they may certainly do so and make copies for any use. Jeff
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May 18, 2008 at 4:52 pm
Norb
I want to thank you and your wife for helping to make this summary of Dr. Raffs speech possible. I printed it so others would understand what we go through.
Thankyou
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Shirley -
May 19, 2008 at 4:01 pm
Norb,
Is Grove near Langley????
My Geography of Eastern Oklahoma isn’t the best, however I went on a Route 66 tour once (not very far) and stopped somewhere near Grove. I then had breakfast in Langley – in a Quanson hut building called the Chicken Coop. Small world.
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May 20, 2008 at 10:21 am
[QUOTE=brettrobert]Norb,
Is Grove near Langley????
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It’s on Grand Lake near Afton and Vinita.
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May 21, 2008 at 8:09 pm
OKC here… I haven’t heard from the OK people regarding a meeting. Too bad, it would be so nice.
I’ve been to Grove, Lake Eufaula, and Tulsa – eastern Oklahoma is so much prettier than OKC with all the hills and more trees.
Jeff – congrats and thanks for your time you give to us!
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