? Calmere Treatments

Has anyone ever heard of or tried Calmere treatments? My pain doc just recommended it to me today and it involves 10, 1 hr treatments of electric waves through 4 leads placed on my body, and its purpose is to "wake up" those nerves and send "no pain" signals to the brain...Thoughts anyone?

Having had experience with a tens unit, I think I can rather relate to this. Maybe. Not sure if it's the same thing. And being newly diagnosed, I don't know much other than what I've researched and also found here. Thus far, my condition is still "being explored." They are not yet treating for CIDP. Just put a name to my symptoms. Hoping to find out results of testing here soon. I am not a hurry up and wait kind of person, and my MDs are all over the state and keeping them all on the same page is a challenge.

It doesn't seem to be invasive, and if it works, Great! Keep us posted. ~ Sis

Thank you for your input :) I did talk quite a bit about this with my physical therapists, and they did say its an "elaborated tens unit"...so they just gave me a tens unit yesterday to bring home and try...but I still haven't decided yet. I guess the only difference is that Calmere tackles your whole body at once, but tens just does one area at a time.

I'm so sorry the docs haven't "truly" diagnosed yet...it can be so frustrating...I know ;) If you don't mind my asking, what tests are they still waiting on? Have you had a spinal tap yet? Do you experience numbness and tingling? Is it all over, or just isolated? I've gone through several ways to "treat" my diagnosis, I guess it just depends on what stage of the disease you're in.

Please don't hesitate to ask questions, etc..because there are many times that I still feel like I'm the only one experiencing this...and I've slowly learned that I'm not..so hang in there...Melissa :)

Hi Melissa :)

I have been diagnosed with CIDP. But two of my Docs have told me that there are literally over a hundred different causes for the CIDP. As of yet, CIDP is a name for the symptoms I have. But as to what caused me to have this, is what they are still digging for. They may not find out what caused this. It's still very new and rare. In the huge big picture, there are not many of us who have CIDP and not much is known about it. While I know that there are thousands of us, that's still a small number when you compare the numbers of others who have like Cancer, or MD or other widely recognized diseases. They both say though, that in some cases, CIDP is, in itself, it's own disease.

I have actually had symptoms, according to my MDs that I just ignored or wrote off as my getting older, and maybe arthritis related issues. The symptoms were so vague, even though I was told to go get checked, what would I have told the doctors? I'm having an off day? I just don't feel like myself these days? They would have nothing to go on. That, and I'm not, nor have I ever been one to just go to the Dr. for just any little thing. It wasn't until I fell this last Nov. That things started progressing. I continued to work with the back pain I had from my fall as I am my only means of support. I worked til Dec. 3rd. The morning of Dec. 4th, I woke early in the morning and got out of bed and fell. I had totally lost all feeling in my right leg. I could move my leg and my foot, but could not feel myself doing it. It was like it was someone else's appendage. It honestly felt like I was shot in the hip with novacaine (sp) I have to be able to walk and help others to walk in my profession as a Rehab / CNA. And so I went in to get checked then. They did xrays and ordered an MRI. The xrays showed no breaks etc. The MRI did show a bulging disk. But as my Dr. said, my other issues... reflexes diminished, off balance, etc were not symptoms associated with just a bulging disk, so he dug deeper and referred me to a Neuro Specialist. He did his initial physical and agreed there was more going on here then my bulging disk. So he ordered an EEG, CT scan of my head, and an EMG.

The Neuro who did my EMG found and diagnosed my CIDP from his exam. From there, more extensive blood work was done, and I also had the Spinal Tap. I assume they are looking for the cause of the CIDP. The Neuro who did my EMG and my MD told me that there are over a hundred different causes for CIDP, but that also CIDP can, in itself be it's own disease, and it would take time to figure that out.

I'm keeping a diary, of sorts on a calendar, of what I experience on a day to day basis. Thinking that it may somehow help the Drs. That and it helps me to feel somewhat in control of my issues, and gives me a responsibility that I can handle and something to do.

My total numbness, where I could not feel anything at all with my right leg gradually over a few days spread to my other leg. I have days where my legs feel like they are tightly wrapped with an ace bandage... too tight. My feet and legs swell to the point where my skin shines. Pitting edema, daily. There are days like today, that my legs feel like they have been dipped in soap or plaster and it's dried and left to feel cracky. My toes are stiffening up and I can't move them much at all. I'm experiencing some foot drop that makes walking a trick sometimes. My balance is off daily, and I have to be conscious of my footing as I walk. It's easier in the house as I don't wear shoes and even though I can't feel my foot much, I can feel the cold linoleum on the kitchen floor with my bare feet. When I take a shower, I can't feel the water running over my skin in my lower extremities.

At night, sometimes, my legs jerk and twitch. At times I get muscle spasms in my back between my shoulder blades that are so painful, it's crippling. I also have pain in my low back due to the bulging disk. I am still able to walk somewhat okay in the house, as I said, I do not wear shoes and I can feel the floor. With shoes on, I have to be very aware of my foot falls to maintain my balance, and outside I need my cane. I do my own chores in my own time. Standing for more then a half hour is painful in my low back, and it gets so much so that it buckles my knees and I have to stop and sit down. I am noticing loss of strength in my hands and arms. I try to do exercises as I don't want to lose muscle but I have to do that in spurts too as it tires me out so much, but not only, is there no one here to assist me... I don't want to be waited on either. As a rehab assistant, I preach to my patients... If you don't move it... you will lose it. And now, more than ever, I am practicing what I preach.

After joining this group and reading the different stories, I, at first was frightened at what was possible in my future. But also learned that each of us is different and thus decided to take each of my days as a gift and try to make the most of them. Stress and depression have been issues that hit me hard. Finances are in trouble. My funds are limited and I just recently lost my BCBS. So now am trying to get assistance with medical expenses that are due to follow and possibly become astronomical. Right now, the only meds I am on are Norco and Flexoril for pain and spasms, and Xanax for my anxiety. I was crying at the drop of a hat and unable to talk to bill collectors, Dr.s , and councilors about things I needed to discuss with them with out sobbing so hard I could not complete a sentence. Its an uphill climb, for sure. I don' t know what my future holds, but each day I get up, and each day I try to do as much as I am able to.

I have to say though, that joining this group... in the beginning, I wondered if it was such a good idea because I was afraid of the possibilities that could yet happen. But have since found that its therapeutic to talk about this with others who actually know what I am saying as they, themselves are also going through the same thing. Even though our symptoms are different, and apparently the treatments are also individual, we are still related in this condition. And it helps. Talking about it helps. I'm also hoping that in the process here, we are able to find and make new friends. We can never have too many friends. It would also be nice to talk about every day things as well, and get to know each other. CIDP is something I have... But I am not my disease. I'm still me. And there is way more to me than CIDP. So thinking outside this box is helpful too. I'd very much like to be friends as well. Thank you for posting here, and please, by all means... Let's stay in touch. ~ Tammy ( aka Sis )