It’s so ironic that you ask this question, as I just returned from my doctor a few minutes ago, and he placed me on the Zone diet. I’m not too familiar with it yet, but it’s my understanding that it is similar to the Paleo diet. My doctor is so certain if I follow this diet it will help with the CIDP. I’m very sorry I don’t have any tips or suggestions yet, but as I become more familiar with this diet I will share. Please feel free to do the same. I wish your 8 year old the very best.

Claudia

Tremblay, I know the leg pain you’re dealing with. I was diagnosed with CIDP in May. The pain was so severe my body would tremble.

I was on heavy medications I’d get from the pain management specialist prior to getting a diagnosis. I went to two different pain management specialists, by the way. When I went to the the second one, I distinctly remember the expression on the physician assistant’s face. She looked at me intently and told me in a very concerned voice that the medication the other doctor had put me on was VERY strong.

I never refilled it nor the other medications I was on. Two reasons for that. One, I was so afraid to get addicted. And two, they did nothing to relieve the pain. The only reason I took them was because they’d knock me out for a couple of hours at night. It would be the only two hours in an entire day that I’d be unaware of the pain. Had I not had the responsibilities that come along with being a mom I would have probably taken these meds just as prescribed. But I couldn’t for obvious reasons.

I went to my naturopath and he prescribed a slew of natural products. I’m listing a few of the ones I’ve been consistently on. There are others I don’t take anymore, and a couple of new products he’s added recently. The following I’ve been taking for the last several months. I take Tumeric, Alpha Lipoic Acid, Kudzu, Evening Primrose Oil, and St. John’s Wart. One of the ones I recently started taking is called Mycoplasma. Supposedly this is to wipe out the virus in my body, though, truly I haven’t done enough research to know much about it. The Kudzu and St John’s Wart I thought was a little bizarre as I felt it was unrelated to my health. But he asked me to trust him, so I have.

I have very little pain now compared to before. Notice, I still live with pain but it’s manageable. I take no pain medication; not even Aleve, Tylenol, or Neurontin (that did nothing for me.) I no longer use ointments as I had before. I’m feeling better little by little. My legs have also gotten stronger. I still don’t trust that I won’t fall so out of the house I still use a wheelchair and inside the home a walker. But truly I can walk, though wobbly. I also have bad balance so I need to be careful. I think I need to address this next with my naturopath.

I’m learning that if I push myself, and not allow good rest throughout the day I will hurt more than usual. My legs on occasion will also swell if I don’t take the time to rest. (Taurine is another natural product that works really well for the swelling.) Since I feel much better and have more stamina rest is something I have to remind myself of now. I do get tired and still can sleep for hours on end. I don’t complain, though, because before, the pain would keep me up. So sleep is welcoming.

Keep in mind that aside from the Mycoplasma, I’ve been taking all the natural products I listed for about the last 5-6 months. Please don’t think your results will be immediate either, although I did begin to feel a teeny bit of relief within the first week or so. It has been a very slow but steady process.

I truly feel for you. I have great sympathy and empathize. I know what it’s like to live with so much pain that concentrating on anything else is almost impossible. I do hope you find something that works for you, too. If nothing else do try the Tumeric as I keep reading and hearing on television programs that it’s really good for pain.

Take care!

Claudia

Thank you, Linda. I sincerely appreciate your sage advice.

The last few days have proven to be overwhelming. I wish so much that it had been my neurologist who had informed me back in May of the necessity to proceed with the IVIG. When my husband asked what those infusions would do for me, all he said was, “They’ll make her stronger.” That was it.

I had never been informed of the possibility of my condition getting worse, or that other systems of the body could be compromised. I was never even told about the related symptoms; nothing. Despite the frustration of that, though, I won’t allow myself to dwell on it. As far as I’m concerned, it would serve no purpose.

I’m ready to move forward as I know now what needs to take place. I’m grateful to Kelly and each of you for having taken the time to open my eyes. Thanks again.

Have a lovely day. But more so, a lovelier life! 🙂

Claudia

How frightening.

I do feel much more confident about receiving the IVIG. I did not realize the manufacturers take such steps to assure the antibodies are not infected. Each time I read the warning label, it does scare me into a panic, though. No doubt this is to protect themselves legally.

I contacted Dr. Dyck’s office. The person I spoke to agreed to ask the doctor about someone in our area who specializes in CIDP. My neurologist, by the way simply told me to see my PCP and let her handle the complexity of getting me approved for infusions, dosage recommendations, etc. In other words, he’s washed his hands of it stating it’s an issue with Humana. I question if my PCP will even know what CIDP is.

Thank you!

Interesting that you’re taking tumeric and your symptoms have considerably improved. Congrats! I am truly happy for you.

When I was diagnosed with CIDP in May I immediately got in touch with my naturopath. He has helped me in the past with a host of problems so I again put confidence that he could help. He had never heard of CIDP and could make no promises, but asked that I be steadfast, consistent with my treatment plan, and remain positive.

I’m on a slew of homeopathic drops, as well as capsules. One of the drops happens to be tumeric. Therefore, your results are very promising.

I’m feeling dramatically better as far as pain is concerned. Prior to alternative therapy I would tremble due to the horrid pain. I’ve been off neurontin or any of the other heavy meds they placed me on. I’m also much stronger than I was, and have more stamina than before.

Despite the tumeric and other natural products, however, I’m still very wobbly on my feet, and my equilibrium is way off. I require a wheelchair outside the home, and a walker indoors because my legs still give out on occasion and down I go. That in itself is so disheartening to me, as I want to walk so badly.

I have many other ongoing symptoms from this disease such as choking and chronic coughing (anyone else experiences this?) that has not improved whatsoever with the tumeric or other products. I was hoping they would make a difference in this respect, but so far NO improvement.

At this juncture I’m seriously considering starting the IVIG. I’m only fifty and cannot see myself in a wheelchair for the next thirty years. I have one huge concern, though. As I read the warning labels on the various medications I notice possible infectious blood diseases. Does anyone here have comforting words about this fear of mine? Has anyone had any bad experiences or know of anyone contracting a disease from these infusions?

So sorry to have gotten off the subject. I am very happy for you, and hopeful one day I too will be active once again. As a mom to an almost thirteen year old daughter much energy, wellness, and stability on my feet to keep up is definitely required.

Tom, I was diagnosed with CIDP in May of this year, but have been suffering from it for a very long time. Similar to yours, as of last year the pain became unbearably excruciating. “Was” being the operative word here, though.

The moment I was diagnosed I immediately contacted my naturopath. Since then the pain has subsided significantly, and I know my legs have gotten stronger. I know this because before I had to lift them with my hands to place them on the wheelchair foot rests, and now I have the strength to lift them without any help. Like you, though, I wonder if the relief will come and go. I wish I had an answer for you.

Despite the significant difference in my symptoms I still fall, have numbness, and have horrible problems with balance. I don’t fall every day or even every week, mind you. But since I don’t know when I’ll go down I’m in a wheelchair most of the time. While I use a walker here at home, so as to work my legs, I can only take a few steps mainly because I get tired. But most importantly because my hands and arms hurt from the pressure I place on them. I’m terrified to fall that I tend to bear most of my weight on the walker. I suppose my reasoning is that unless I’m holding on to it tightly and my leg or legs give out the walker won’t support me.

While this alternative approach seems to be helping me, I question if I’ll ever walk again without falling. When I spoke to the naturopath I asked if he had ever heard or treated anyone with CIDP. He was honest and said no. However, he mentioned that he along with his collegues around the country have done extensive research and have had much success in treating nerve related issues. Only time will tell if this natural approach will help me.

I wish you the very best, and truly hope whatever treatment you are using will help.

Sorry for making this so long. It is such a relief, however, to be able to share with others my personal challenges, and know I’m completely understood. It’s also been quite refreshing to read everyone’s posts. I’ve gleaned so much from their insight.