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The people on the forum, like usual, have given you wonderful advice. The life of ivig is like 21 days and so you do not have enough of it in your blood to keep you going. When my daughter was diagnosed, she was like you and not getting enough. When we finally saw the right doctor, he had her get ivig once a week until she came back to baseline and then he started spreading it out. He is well known in the cidp world and he told us that 50% of adults eventually overcome cidp. SO THERE IS HOPE. Also, it took the wonderful people on this forum to help me to realize that I was at a turning point and that I needed to find a new doctor for my daughter and i did and i am so grateful. I really believe that they are the experts because many heads are better than one. Best Wishes.
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thanks for listening to me vent. I know it seems like a lot but sometimes i think i should be able to do more. I get so bored when i have to stay home. But i am learning to listen to my body more and just not ignore it. maybe sfter i finnally get IVIG i will have more energy. My brain just is too far above my body in energy.
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Peteacher gave you some wonderful advice. I have never heard of an age thing either. Most doctors who know what they are doing will work with you until a proper dosage for each individual is found. Our doctor is wonderful and believes in ivig and getting it as often as you need it. PLEASE LOOK FOR ANOTHER DOCTOR. It took us awhile to find our doctor and when we did, he ordered weekly ivig until my daughter was back to baseline and then started to spread it out. HE KNOWS CIDP and that has helped tremendously. You need to find a doctor in your state who really knows cidp. Put out a cry on the forum and ask for suggestions or get on the internet and start googling. It is cases like your that get me worked up!
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thanks i know it seems i am not heeding your advice but i try. I am stuck right now because my mom is out of town and she handles my appointments. I know i should be making my own dr apptments but i cant get to them without my parents and i cant pay for them without my parents. it seems way to complicated but thats tthe way it is. My mom is trustee over my money and everything goes though her. it is a long complicated story that has to do with my mental health issues before GBS/CIDP.Sorry my post are frustating but imagine how i feel. tthaanks for the replies. Jojo
Advice
I thought the suggestions made and listed in the emotional coping section were really good–especially these six, which I will kind of speak about and expand as they may apply. First, though, I think it is important to say that most of us feel discouraged and sad. GBS comes on like a bonk to the head with a sledge hammer and the amount of change in life is tremendous as well as its abuptness. It takes time for one’s brain to catch up with all this. I think lots of people struggle to keep positive. Second, it is important to say that pain is depressing and it is almost impossible not to be depressed if there is a lot of pain. It takes over your life–so the first thing for you to do is to find a neurologist that will help address the pain until it is better.
1. Find what works for you. Each person is different in what is important in life, in how they cope with change, and in how they are affected by GBS. A tiny suggestion is to spend a day thinking about your goals and concerns–not with an “I can’t do this anymore” attitude, but from either 1. I miss this a lot and how can I get this to work again in my life or how can I substitute to get the same pleasure or 2. how can keep this from happening? For example, if one of your pleasures in life used to be going to concerts or book club or religious service or whatever but it is too hard to walk to go there right now, can you get a wheelchair and go with a friend, or invite a few friends for your own small concert–with CD or music video–at home? i say this because to me the isolation from usual social activities and limitations in walking really make a difference and finding ways to re-people my world, although different, helped a lot. One of my worries was losing touch with friends and family–so I tried to make a point to call them and to ask about them and be excited about their lives even though mine was more different now. Sometimes kind people do not want to share their normal life with you after badness has happened to you or now that you cannot do that. I tried to let people know that I appreciated them and their normalness and it did not distress me (most of the time) that I couldn’t do things anymore–at least relative to losing touch. One of the people at the symposium talked about how worried she was about getting weak and that she addressed this by starting an exercise program (and PT). That she started doing 3 minutes at a time because this is all she could do, but she kept saying I am doing this to get stronger and kept working at it.
2. Communicate what you need and want. It is so hard for people to understand the changes and restrictions in energy and stamina after GBS, that most cannot know how hard it is to walk 200 feet. They also, thus, cannot know how to help. Let people know if it makes things much better if you are dropped off near the door rather than walking from the parking lot. Get a disability placard if you used to drive. I think one of the best things I learned at the recent symposium was how important it is for people to preserve energy whenever they can so that what they have to use can be used as “quality time” and people respond to the fact that they can help so that you have quality time with them–that it is special to be with them.
3. Be kind to yourself. I think this speaks for itself. I know I have spent a lot of energy with the “I used to could do this” stubbornness and the “I ought to do this” guilt. If it really will not make a difference in your day, drop it and don’t feel guilty about it. Really and truly, is it that important to make your bed each day? Probably not. So use your limited energy with what is important–talking to friends or family, doing work, seeing the baseball game of your son….
4. Set realistic goals. So much of life is filled with a lot of running around and busyness. If you cannot do much of what you used to do, what might you be able to do? Have you always wanted to paint or to learn to knit? You might have time to do this at this point in time and many of these type things do not take as much energy–although only you know your arm stamina. I think of this as a door closed–find window to open situation. It lets one do something that fulfills you and to think about something good coming out of a hard time rather than feeling sorry.
5. One of the suggestions was to act as if…. one feels better or as if one is not discouraged. If you work to show cheerfulness (even if it is hard), you will feel some of it and it will be easier the next time. Maybe more importantly, if you act that you are a strong person with limitations, you will feel a lot stronger and it will be easier for other people to associate with you than if you think of yourself as a series of limitations. Maybe this is acting as if life is moving forward under your own direction rather than “life is bad and I have no control over it.” It seems that one has to find a belief that life continues, then has to start acting as if this is the case, exploring options, and eventually it will be the case and you will have a way to better cope and to better live life.
6. Look for the humor in life. See, I have not for years made my bed every day, but now I have a good excuse! When I used to climb mountains, I would make time to stop to admire the view. So now with “mountain climbing” the stairs, I have had to stop midway up and I tell myself it is “to admire the view”! i tell people that elevators at work are a tremendous blessing–not for the obvious fact, but rather that one has to stop and wait for them and that rest is really appreciated in my life now!
Lots of words because this is important and it is something that I have thought a lot about as I struggled with it and tried to see the windows and the “can do”s in life. I also think some of my most repeated words this last year are “I think I can”–used for stairs, times when I have to walk farther than usual, and as the day goes on. I may be slow, but I am determined.
I hope that this helps.
WithHope for a cure of these diseases
Advice
Hi Cheryl,
If I go back in my memory, I can relate to what you’re saying, I just wish I had answers too. When my husband was dying from cancer (he was being cared for at home), I had hospice help coming in, plus family and you do feel like you’re being selfish, but I’d cry inside myself that I need help too. And taking care of and helping my mother the last five years, there was very little help from family, I’d wear myself out trying to do my best even though I’m in a wheelchair.
I think most of us are going to tell you “you’ve” got to be the one to take care of yourself. Hubby can get a walking cast and get up and take care of himself. I broke my foot twice and I took care of myself. Don’t let yourself feel guilty and give yourself some time alone so that you can take a nap or just sit at the computer to talk to us. If you can afford it, hire someone from a homecare agency to help out.
When things are under control and calmer for you, come to Florida and visit me in my new home. How about the winter, when snow is on ground.
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When you go to the new doctor take some information on GBS and pain with you. Either search the forum threads for pain advice and print that (such as this thread) or even better take some of the information written by a doctor in either the newsletter or in the packet sent out from the GBS-CIDP foundation. The latter is better because doctors appreciated things written by other doctors more than by lay people (even “experts” like us that live with this disease). I say this through working in healthcare.
I would strongly suggest that you ask to be put on neurontin, Cymbalta, or Lyrica. These are all medicines for the pain of peripheral neuropathy–the burning pain in the legs and arms especially feet and hands. This class of medication may work better than lortab, but more importantly for your situation, they do not have the same restrictions as the classic pain medicines/narcotic pain medicines. Neurontin (gabapentin) is an older medicine. Sometimes Cymbalta and Lyrica are denied because they are newer and very expensive. The biggest issues with neurontin is that you often have to start at a lower dose and slowly escalate upward; otherwise you can feel quite sleepy or fussy. The other big problem is that people often do not escalate high enough to really take care of the pain. Often people need high doses–1200 mg three times a day or more.
Another consideration is Ultram, which other people on this forum use for chronic pain. This is regulated, but not as strictly as some of the other (narcotic) pain medicines.
Limekat’s advice to take someone with you is also good–for support and for someone else to say what impact this pain has on your life.
All that being said–if lortab works for you, you should continue to use it as needed as you try new agents or combinations. The priority should be adequate pain control, not just medicines that are easier for caregivers to prescribe. The best treatment for depression is not feeling in awful pain all the time.
WithHope for cure of these diseases.
GBS 3/07
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Let’s see if anything I say can help. I did well with IVIG because even though I was severely damaged, I only got worse in very small spurts. It did not happen to me rapidly. Had I got worse at a rapid pace, most definately, I would have been talking to my doctor about more aggressive treatments and he would have listened.
Even though I am not progressing anymore, I was never told by my doctor that I’d heal 100% or that IVIG would heal me 100% and after almost four years now of being stable, I think I have reached my window of healing.
I hope this family will consult with a neurologist who has a great deal of knowledge of CIDP before it is too late. It might be possible that you can still control the progression of CIDP following his doctor’s instructions, but I do believe that the longer you wait to find out if this is the right treatment, the more damage will done and you are left with the residuals, damage that cannot heal.
Advice
Hello Rachel,
Welcome to your new family where we feel what you feel. You’re headed in the right direction now. When you start seeing the neurologist, it would be a good idea to have all the tests done, EMG, NCV, MRI, specialized bloodwork and a spinal tap or lumbar puncture. It might be a good idea to also ask the neurologist about Miller-Fisher Varient, which can effect the face, but I know with my CIDP my eyes can bother me. Many of us live in areas where there are not too many well informed neurologists, so what you want is one that is willing to learn along with you. We all struggle with fatigue, a very big part of GBS/CIDP, so LISTEN to what your body tells you and TAKE NAPS when you need to. We’re here when you’re ready to tell us more.
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Hello,
When we go through a chronic illness like GBS or CIDP, like I have, some of us can feel like we have died and we can grieve. I think it would help you understand what your friend is going through if you read about how to handle the GRIEF CYCLE. I’m sure you can do a computer search for the steps of the grief cycle or buy a book.
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Hello Pep,
Our prayers will be with your sister-in-law. The only other thing I can think of that might help is to get a letter from her doctor that says these medications are vital and you cannot afford them. Send that to the pharmacies.