Looking for advice

General General CIDP Discussion
21

Hi B. I am new to this website. I have been diagnosed a month ago. I would like to know how long before you were actually able to start walking or how long until you actually felt the strength to start walking again. By this being a very rare disease, also, did you get depressed? and how did you deal with the depression? My wife is 6 months pregnant and I am curious as if will I be up by the time my baby gets here, or did it take you the whole 6 months before you were able to walk again?

Thanks,

Rock

22

Hi Rock,

Everyone seems to difer in their recovery time but I would stay positive. I remeber my wife saying to my Neurologist "He seems depressed" and his answer was "of course he is he has CIDP". We are allowed to feel down sometimes as long as we don't make it our lifestyle. We all need to stay positive for the sake of our Carers ( Spouse or Friends) they really do not understand how CIDP affects your whole life and we need to do a little caring ourselves. Stay strong and look forward to holding your baby.

Good luck

Profmodi

rock said:

Hi B. I am new to this website. I have been diagnosed a month ago. I would like to know how long before you were actually able to start walking or how long until you actually felt the strength to start walking again. By this being a very rare disease, also, did you get depressed? and how did you deal with the depression? My wife is 6 months pregnant and I am curious as if will I be up by the time my baby gets here, or did it take you the whole 6 months before you were able to walk again?

Thanks,

Rock

23


profmodi said:

Hi Rock,

Everyone seems to difer in their recovery time but I would stay positive. I remeber my wife saying to my Neurologist "He seems depressed" and his answer was "of course he is he has CIDP". We are allowed to feel down sometimes as long as we don't make it our lifestyle. We all need to stay positive for the sake of our Carers ( Spouse or Friends) they really do not understand how CIDP affects your whole life and we need to do a little caring ourselves. Stay strong and look forward to holding your baby.

Good luck

Profmodi

rock said:

Hi B. I am new to this website. I have been diagnosed a month ago. I would like to know how long before you were actually able to start walking or how long until you actually felt the strength to start walking again. By this being a very rare disease, also, did you get depressed? and how did you deal with the depression? My wife is 6 months pregnant and I am curious as if will I be up by the time my baby gets here, or did it take you the whole 6 months before you were able to walk again?

Thanks,

Rock

Well, I was in the hospital for a couple of months and was paralyzed there and when I got out it took a couple of months to walk with a walker, so about 4 months before I could walk at all and about 7 months to walk without a walker. But the time is different for everybody. There is a man who goes to the same hospital that I do that is 2 years into it and is still using a walker so it varies a lot. I am told by some of the medical staff that the big difference between him and me is that he does not want to do his therapy at all so the best advice I can offer you is do your therapy. I can't walk for more than a half an hour or so before sitting down and I kind of zig zag but it still feels good to be able to walk. As far as depression goes I have to say I was just in complete denial about the whole thing, I mean some of my friends didn't think I was going to live and I just couldn't listen to stuff like that. The pain was really bad in the hospital and when I got pain medication I slept and that was a relief. Then when I started to get better I became very thankful for everything I was getting back. It's weird but in one way I am happier now than before I got sick because I am so happy every time I find I can do something I could not do a month earlier so what works for me is focusing on getting better and asking questions of your doctors and of people on this site who I think often have answers that you will not find anywhere else. My doctors cannot tell me how much better I will get or how fast but I have found that for me if I just don't stop trying to push things I find that every week or 2 I can do a little more. There are medications to help with the depression you can talk to your doctor about and keep remembering you have only been getting help for a month now but now you are getting help. This is the start of your way back! B.
24

I posted earlier about my central port getting infected and I want to post an update in case it can help anyone else. The infections are apparently caused by an allergic reaction to the disinfectant used to clean the port combined with the adhesive used to cover the port. So if anybody else has this problem this is something to check. B.

25

Hi Rock,

Welcome! This site has been very resourceful and a great place to meet others who understand and can share their stories and experiences.

I definitely faced some depression when I was diagnosed at the end off June. I tried to power through for 2 months or so and ended up taking some time off work to figure out what my new normal was going to be like. It has helped along with talking to a therapist. I was also taking on a promotion at work so that could have added to the stress.

What kind of treatment(s) are you getting? I didn’t lose the ability to walk so I can’t offer any help there but hang in there!

Stay positive!



rock said:

Hi B. I am new to this website. I have been diagnosed a month ago. I would like to know how long before you were actually able to start walking or how long until you actually felt the strength to start walking again. By this being a very rare disease, also, did you get depressed? and how did you deal with the depression? My wife is 6 months pregnant and I am curious as if will I be up by the time my baby gets here, or did it take you the whole 6 months before you were able to walk again?

Thanks,

Rock

26

A day after I was diagnosed with cidp, I felt a lot weaker and loses muscle control from my waist down. For the next couple of days I was experiencing foot drop not to mention problem with my bladder and bowel control. The doctor started me with 45mg/day prednisone (corti-steroids) and have to suffer the side effects of the drug. My legs and feet began to swell due to edema (water retention) and I couldn't sleep. This was the most depressing period of my life. Ever since, my wife is a regular housewife and have little knowledge on how to run our livelihood. Before this happened, I do take care in running the delivery business which is quite complicated specially dealing with office staff and drivers. She has to learn and I have to teach her while trying to control my temper, depression, and frustration. The worst feeling is that you are physically useless. Anyway, a week after, my legs started to respond. By the end of the second week, I could managed a walker but with difficulty due to lack of endurance. My neuro started to cut down the prednisone to 30mg/day for 2 weeks. At this stage I decided to fight and be optimistic. I spend most of my time walking unaided on the cool water of the pool (starting at shoulder deep water). Cool water to excite my nerves...(warm water tires muscles after 20 mins). Bathe on the early morning sunshine (natural vitamin d), lifting weights for my arms and biceps, virgin coconut oil, omega oil, and AlaNerve vitamin. Physical therapy sessions 3x a week. At his stage I felt that the progression has been arrested and hopefully the road to recovery. After a month, my neuro cuts down the prednisone to 15mg/day for a month. Didn't change any routine, attempted to use a cane but using a walker with seat is more practical at this time. I managed to visit my office from time to time. I could drive my car on short distances. I am doing fine really but I have to do much more to improve my stamina and endurance. I still feel discomfort on my legs, feet, and soles but can manage. On the 3rd month, my neuro cuts down the prednisone to 12.5mg/day. I am still very optimistic that my recovery will be soon. I have to adjust to my new life and changes have to be made. I have to rely more of my wife to take care of me and the business. I have to accept that my physical abilities will be limited compared to what I do before all of these. It's my neuro's appointment second week of January and I want to hear what he thinks about my progress. So Rock, as your name suggest ...we can fight this and we, together with other brother and sisters with cidp/gbs will overcome this agony. Merry Christmas........

ultmax

Jmlz said:

Hi Rock,

Welcome! This site has been very resourceful and a great place to meet others who understand and can share their stories and experiences.

I definitely faced some depression when I was diagnosed at the end off June. I tried to power through for 2 months or so and ended up taking some time off work to figure out what my new normal was going to be like. It has helped along with talking to a therapist. I was also taking on a promotion at work so that could have added to the stress.

What kind of treatment(s) are you getting? I didn't lose the ability to walk so I can't offer any help there but hang in there!

Stay positive!




rock said:

Hi B. I am new to this website. I have been diagnosed a month ago. I would like to know how long before you were actually able to start walking or how long until you actually felt the strength to start walking again. By this being a very rare disease, also, did you get depressed? and how did you deal with the depression? My wife is 6 months pregnant and I am curious as if will I be up by the time my baby gets here, or did it take you the whole 6 months before you were able to walk again?

Thanks,

Rock

27

Hi, this is "Rich's" wife, Dora, writing. This is in response to ultimax and his weight lifting. My husband and I live in Birmingham, AL and he has an excellent physician and hospital to help with this strange disease. Rich, who has always been a weight lifter, had lost most muscles to atrophy and recently started back trying to lift some weights. When he mentioned it to his neurologist a month ago, she told him to STOP. She said (and drew a diagram) that when a nerve neuron (not sure this is the right word) dies, the one next to it tries to take up the slack. She said when you are lifting weights, you are putting more stress on the neurons (?) that are remaining and it could cause them to die as well. We are so glad to find this support group, are getting great information here. Rich starts his second round of infusions next week and we are praying they will soon make a difference in his strength/stamina. He has extreme weakness and "foot drop" in his left leg and he sometimes falls as a result.

28

Maybe the neurologist said that because at this point we don't know if we're dealing with CIDP only or CIDP and ALS together. Praying for a diagnosis of CIDP only. Rich does keep as active as his limitations will allow him. He builds things in his workshop, does repairs around the house, rides an incumbent bike. Thanks for the info, mdolich.

29

PROFMODI:

I used to prescribe amitriptyline quite a bit for sleep. It is a TCA (tricyclic antidepressant), but newer antidepressant medications have generally replaced it. The best uses (some are off-label, but legitimate uses) are for neuropathic pain, fibromyalgia, migraine prevention, anxiety, and ADD- just to name a few. It also should give you some sense of well-being in dealing with CIDP (it still works as an antidepressant, too!).

profmodi said:

Hi All,

Was interested to hear of someone else who takes amatrepyline for sleep I just love it. It is a muscle relaxant which also helps with a touch of Dystonia I have. The story of power naps is very like the 'mindfulness" my Phsychologist has taught me

and, like the power naps, it really eases the exhaustion which I find is almost the worst part of CIDP. I am now 5 years on in my CIDP and am still waiting for my first remission maybe it will come for Xmas. Stay strong and have a pain free day.

30

MDOLICH, et. al.:

Antidepressant classes include the following:

1. Selective Serotonin Reuptake Inhibitor (SSRI)
  • Sertraline (Zoloft)
  • Fluoxetine (Prozac)
  • Paroxetine (Paxil)
  • Citalopram (Celexa)
  • Escitalopram (Lexapro)

2. Tricyclic Antidepressant (TCA)

  • Amitriptyline (Elavil)
  • Nortriptyline (Pamelor)
  • Imipramine (Tofranil)
  • Desipramine (Norpramin)
  • Doxepine (Sinequan)
  • Trimipramine (Surmontil)
  • Protriptyline (Vivactil)
  • Maprotiline (Ludiomil)
  • Amoxapine (Ascendin)
  • Clomipramine (Anafranil)

3. Serotonin-Norepinephrine Reuptake Inhibitors (SNRI)

  • Venlafexine (Effexor)
  • Desvenlafaxin (Pristiq)
  • Duloxetine (Cymbalta)

4. MAO Inhibitors

  • Phenelzine (Nardil)
  • Tranylcypromine (Parnate)
  • Selegiline (EMSAM)
5. Atypical Antidepressants
  • Bupropion (Wellbutrin)
  • Trazodone (Desyrel)
  • Mirtazepine (Remeron)
6. Add-on Agents
  • Aripiprazole (Abilify)
  • Olanzapine (Zyprexa)

The TCA's and MAO inhibitors are the older class, but still useful in many cases. Recommendations would be dependent upon one's individual case and co-morbid conditions. It is also important to note whether they are being used for depression only, or an adjunct to neuropathic p[ain (Cymbalta and the TCA's work better for the latter).

It is also important to note that other NON-antidepressants are often used for neuropathic pain, such as Gabapentin (Neurontin), Valproic acid (Depakote), Carbamazapine (Tegretol), Pregabulin (Lyrica), and many others. Again, such agents need to be targeted to your symptoms, and have many contraindications. Sometimes the drug is worse than the symptoms you are treating.

NOTE: the list above is not necessarily 100% inclusive of agents currently available.

Remember, all classes have potential side effects, and there is no "clean" antidepressant (click on this link for further information: Antidepressant Side Effects).

Also, there are definite contraindications to certain drugs/classes depending upon other factors (and pregnancy). An excellent guide to most aspects of antidepressant therapy can be found at: http://www.dr-bob.org/tips/antidepressants.html#Contraindications (click link).

I hope that this information is helpful, and not too confusing. I will gladly answer any questions to the best of my ability, but must stress that your doctors know (or are supposed to know) which treatment(s) are likely to be the most appropriate for your needs.

God bless.



mdolich said:

Thanks for the input Mayberry. What are some of the newer antidepressant medications that your talking about?? Our members would probably like to know in order to ask their neuro's about them.

""Stay Strong and keep a Positive Attitude""

Mayberry said:

PROFMODI:

I used to prescribe amitriptyline quite a bit for sleep. It is a TCA (tricyclic antidepressant), but newer antidepressant medications have generally replaced it. The best uses (some are off-label, but legitimate uses) are for neuropathic pain, fibromyalgia, migraine prevention, anxiety, and ADD- just to name a few. It also should give you some sense of well-being in dealing with CIDP (it still works as an antidepressant, too!).

profmodi said:

Hi All,

Was interested to hear of someone else who takes amatrepyline for sleep I just love it. It is a muscle relaxant which also helps with a touch of Dystonia I have. The story of power naps is very like the 'mindfulness" my Phsychologist has taught me

and, like the power naps, it really eases the exhaustion which I find is almost the worst part of CIDP. I am now 5 years on in my CIDP and am still waiting for my first remission maybe it will come for Xmas. Stay strong and have a pain free day.

31

It seems this disease is so rare that the neurologists are not all in agreement about the course of therapy. I asked my neurologist if I could overdo exercise and he told me “No, you’ll just be tired the next day” so I have put no restrictions on what I try and do. I do notice that if I lie around for a weekend without doing much it hurts more to walk the following week.
I have heard differences of opinions by neurologists reported here regarding treatment as well as regarding therapy. Recently my neurologist said in a few weeks he might consider scheduling my plasma pheresis treatments once every 3 weeks instead of once every 2 weeks. I asked what determines the frequency of the treatments, if it was a level of something in spinal fluid or a blood test of some sort or what. He responded “We’re flying by our seat of the pants here”. He said if I get worse we’ll increase the frequency. Because of varying options by neurologists about what to do about this rare disease I go to this website, try and determine the most common course of action (which in my mind translates to the preferred course of action) and suggest that to my neurologist. He will discuss with me the reasons he does or does not think I should do something. If I still disagree and as long as it is something that will not interfere with any treatment he is providing then I talk it over with my family doctor. The bottom line is there are a some differing opinions by doctors on treatment and therapy and by coming to this site and looking for answers at least your husband is better off than patients that don’t research alternatives. As for what I would do about the exercise I generally go with the most common therapy discussed here. I haven’t heard of the reason given by your neurologist for not weight lifting. I’m curious if anyone else has. B.




mdolich said:

I have to disagree with your husbands neuro. I have been dealing with GBS/CIDP for almost ten years now. Sure when I first came down with GBS back in 2003 (I was rediagnosed CIDP in 2006), I went from 230lbs down to 165lbs during the time I was in ICU and the hospital, due to muscle atrophy. I was in great shape prior to that, going to the gym everyday, working, skiing, etc…

I started rehab in the hospital, sure I started out slowly, but worked out the different muscle groups in order to gain strength. It took me about two years till I was back goinging to the gym. I’ve had had 5 different neuros, in Montana, Florida, and now here in Utah. All have encouraged me to workout, although they do say to only do what I can and not to OVERDO it. My current neuro at the VA hospital (who is execllent) even set it up for me to use the gym at the hospital.

Even in the magazine “IG Living” they have articles on the importance of exercise for people with GBS and CIDP. I have gained so much strength back and I’m back up to 260lbs (of course I’m 6’5", lol). I’m back walking good, even though I have to wear AFO’s due to drop foot, and I feel great. I go to the gym every morning (execpt weekends) and workout. I weight lift, use the treadmill (just walking at a fast pace due to AFO’s). But I do take it SLOW & EASY, I can’t lift weighlike I use too, but I still lift. Take it for what it’s worth. By the way you can get a FREE subscription to “IG Living” at this link. http://www.igliving.com/ , it is a great magazine full of information on different neurological disorders. You can either read it online or have it sent to you. You can read past issues online too.

Good Luck, ““Stay Strong and keep a Positive Attitude””

Rich said:

Hi, this is “Rich’s” wife, Dora, writing. This is in response to ultimax and his weight lifting. My husband and I live in Birmingham, AL and he has an excellent physician and hospital to help with this strange disease. Rich, who has always been a weight lifter, had lost most muscles to atrophy and recently started back trying to lift some weights. When he mentioned it to his neurologist a month ago, she told him to STOP. She said (and drew a diagram) that when a nerve neuron (not sure this is the right word) dies, the one next to it tries to take up the slack. She said when you are lifting weights, you are putting more stress on the neurons (?) that are remaining and it could cause them to die as well. We are so glad to find this support group, are getting great information here. Rich starts his second round of infusions next week and we are praying they will soon make a difference in his strength/stamina. He has extreme weakness and “foot drop” in his left leg and he sometimes falls as a result.