Wednesday, March 26, 2014

RSD treatment - CALMARE - Day 2 & 3

So for those that don't know, I have been diagnosed with a condition called RSD. No one really knows how you get it. It could be from an injury, shingles, surgeries, etc. Unfortunately I have had all three within the last two years - two injuries, shingles and 3 surgeries. It left me with this nerve condition. Basically my nerves tell my brain that there is pain in my knee but there is really nothing physically wrong with it. 



My husband and I traveled to New Jersey where there is a doctor who specializes in treating RSD patients. There are about 10 doctors in the US that use Calmare therapy. People travel from all over the United States and abroad to see this doctor. He has a woman traveling from Switzerland next week who has RSD. It is a really painful condition. 

Day 1 went well. The treatment doesn't hurt at all. It is completely non-invasive and has no side effects. There are no drugs to take. It is FDA approved and some insurances are starting to pay for it. The cost is $2500 for 10 sessions. This sounds like a lot of money. But when you consider the surgeries, medication, injections, doctor's appointments, etc. it isn't that bad. 

The machine has ten wires attached. At the end of each wire is a pad. 



I have RSD in my left knee and so five pads are attached to your spine and five to your foot. Basically the doctor wants to get on either side of the pain. The pads send electricity or shocks through the area. It is helping to train my brain and reset the nerves. The machine is like a TENs unit (for those that have tried that) but it has about 20 algorithms. This means there are a bunch of patterns to the shocks going through your body. Some are strong and short, others are longer and dull. 

Your brain is very smart. It gets use to things very quickly which is why I have had to up my pain medicine over the last few months. My brain and body got use to it and so I need something stronger. But with a bunch of patterns, your brain doesn't have time to get use to them.

Yesterday I woke up with the worst pain yet. Sometimes your nerves get temporarily worse before they get better. The doctor compared it to working out a new muscle. Your muscle becomes sore before it becomes stronger. The same is true with nerves. 

Except I didn't realize this. I walked in on Day 2 (yesterday) thinking I was done with this treatment. Pain makes me a bit crazy. It is hard to think through it sometimes. 

I ran into another patient coming out and she said she experienced the same thing. She is 18 and has had RSD for 4 years! Her dad drove her 10 hours to get to this doctor. She came in a wheelchair and is now completely walking - within two weeks of treatment. 

Day 2 went well and I woke up with slightly less pain this morning. Day 3 (today) went very well. I downgraded myself from a very strong pain pill to a slightly less strong pain pill. Ha. I was walking without a cane for a bit today. 

The treatment lasts about 40 minutes. Most people feel itchy and sleepy afterward. 

People respond differently to the treatment. It takes about 3-5 sessions to feel less pain. The 2-week treatment plan will last anywhere from a few months to a couple years before I will need a 'booster' treatment. 

I will continue to update my blog. Ebay and basically everything else is on hold right now. Please feel free to ask any questions. I realize there are a lot of people out there who are hurting.

11 comments:

  1. I just found your blog from an ebay reseller blog. I have RSD too and I am curious about the calmare therapy. I would travel far away for something that worked really well! I am going to see if they offer it closer to me. I hope that you will continue to post updates. I really hope that it helps!!

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    1. Thanks Zoey. I'm not sure where you live but there are treatment centers in NY, NJ, Rhode Island and one in FL it looks like. The NJ doctor is the one I'm seeing. He offers the first treatment for free. He is a character but who cares if it helps, right?!? Haha. I wish you the best. I had never heard of RSD until my third knee doctor diagnosed me. Calmere has a 70-80% success rate. I have heard some really great stories.

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    2. Hi Zoey - I asked my doctor if there are any treatment centers in the west and he gave me this link:

      http://calmarett.com/locations.html#panelid=WesternRegion

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    3. I am also on the West coast. My son got treated last year in Utah by Dr. Chalmers and it has been the only treatment so far to help his pain. But he needs almost daily treatments to address his pain. I just heard that there is a new location offering Calmare in West Lynn, Oregon (not listed on the link above). THere was also a location in San Diego last year, but I don't see it listed. Good luck with your treatment. We are total believers in this treatment because it has helped our son so much!

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    4. Thanks for the comment Elisa. I'm so thankful it is helping your son. He gets the treatment every day? Wow. We live five hours from the nearest doctor. I'm so thankful to get 10 treatments. I am hoping they last atleast a few months.

      My doctor said to make sure a doctor works the machine. There are others with it but sometimes you will get a tech. It took my doctor several times of repositioning the pads to make sure he hit the right nerves.

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  2. I am on the west coast and travelling is really painful for me. I am VERY sensitive to the vibrations of the car/ airplane and the road. I haven't really gone more than 15 minutes away from my house in years. Do you have that trouble with travel? I will keep checking your blog for updates from you. If the treatment worked well then maybe the increased pain from travel would be worth it. Thank you for responding. :)

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    1. Yes, those little vibrations kill me. I have also been limiting my travel. Besides doctor's appointments, I rarely get out. I'm really hoping this helps. I'm going to ask my doctor today if there is anyone on the west coast.

      For the five hour drive here, I brought my TENs machine, took major pain pills and my husband stopped a bunch of times.

      The 18-year old girl I mentioned in this post had to drive up from NC - a 10 hour trip. Yikes! She said she also had the same vibration problem. Her father stopped at a hotel mid-trip and she also took major pain pills.

      If you have Ambien to help you sleep, could you take one of those on the plane since it is a longer trip? Just a thought.

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  3. I'm glad you're staying a few more days. Still willing to take the drive out next week if you want company oxox

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    1. Thanks Li. I'm just not sure it would be worth it for a 4 hour round trip on your part. Especially if all I'm doing is laying in bed. It would be different if we could go to a local diner or shopping or something.

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  4. I also saw a Dr. In Jersey Dr. GETS ON HE SUGGESTED KATAMINE I FUSION I REFUSED IT SOUND SCARY AND HEARD IT MAKES YOU WEIRD!!!

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    1. Ketamine was an awful experience for me. However, I had the high dose Ketamine. I do not recommend it. You can search "Ketamine" on my blog for more details. But I have heard others doing well with low dose ketamine. :) Just a head's up. Isn't Dr. Cooney great? Thanks for the message Lida. And I'm sorry to hear you also have pain!

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Thanks for commenting!