Spinal Cord Stimuator

I have had CIDP for ten years, with severe regular pain in my feet and legs 24/7. Opiates have been the most effective, by far. I also try every other chronic nerve pain treatment my doctor has recommended. Ten years out, here I am, not able to sleep because the pain wakes me. I also dream about it having pain. I am nearing retirement time in three years, but fear I will have to throw in the towel early and go on disability in the near future.

My next options are spinal cord stimulation, then marijuana if the device doesn't help much.

Any experience with these treatments? I'd like to request that we don't bring other options into the discussion, because I have probably already tried them.


I don’t recommend a spinal cord stimulator simply for the fact that you will not be able to have an MRI with it in place. You will need future MRI’s.

My partner had to remove hers because of needing MRIs for this disease.

Hope this helps.

I hope our Government makes marijuana a schedule two Drug then they can study it more now they can only study one strain I am like you the pain keeps me up every night I fall asleep for two hour’s if lucky I would try marijuana if it would help me even with that (SMELL) it stinks I have a friend that uses it and it smells bad at this point I would do anything to help in my State it is all most impossible to get a prescription and I cannot find a doctor to speak to me about it at all or they do not take new patients I would pay cash for just 15 mins of there time if anyone knows about this subject please help thank you

The new MedTronic units are safe during MRIs.

My Dr.has suggested my next step be the stimulator also. I to would like feed back. I feel afraid of it for lack of knowledge. I don’t sleep well either.

Hi I don't know the pharmaceutical name for marijuana substitute. But it is out there for the doctors to prescribe and it does work. It also helps your appetite. I know you said don't bring in other options, but these are old fashion remedies I use. Self hypnosis and that works most of the time especially at night. Sometimes it is as sometimes as simple as the fact that your body has not moved enough as you sleep. If you sleep on your sides, the legs usually lay one on top of the other. Same as when you sit too long in the same position. I also get up and move around a lot until the pain eases and then hit the sack again. I have a vibrator sheet and when I have the worst pains, I turn it on and it does a full body massage . Fluid retention also adds to the pain. . .Cut down on salt. It makes a big difference. Leg massage helps ease leg pains Have you had your B12 vitamin levels checked? B12 is great for nerves. Hot and cold packs is another old time remedy for pain.

and Spinal cord stimulation sounds like an invasive procedure. And it is not for me. and opiates are out of the question. When I was on them, my daughter said I was totally "discombobulated" Which meant I was out in another world.

MJ helped me through tough times but it lasts only 2hours before the effects wear off so in my case, I would have to consider being stoned all the time or in your case all evening. The benefits were worth it!!! Considered SS but the research I read were not immediately encouraging, reporting not much better than 50% reliable relief. Some test probes can be tried or more intense TENS.

hi anyone every hear of radio frequency Rhyzotomy.(Spelling?) Suppose to deaden the pain. Good for back pain, shingles and trigeminal neurology (affects the face). Was told after the procedure, it did wonders on his back pain. Couldn't stand too long and after the treatment was able to mow the lawn. On the trigeminal neuropathy, the pain in her face disappeared and never returned.

I'm also ten years in. I had a spinal cord stimulator implanted 6 years ago and kept it for a couple of years. I wouldn't recommend it. It's important that you know it is a "mask", like a distraction from the pain. I don't think it's your answer especially when it comes to sleeping. You can't sleep on your back and if you have it on while sleeping, it can be annoying. You can't do yoga and other stretches. I think any stretching is very helpful. In my opinion, yoga (modified for your needs) is better for pain than any implant. The configuration or placement is also quite tricky and may require additional surgeries.

If interested you can do a trial, but realize that the trial is not the same as an implant. I also do acupuncture, self hypnosis, and meditation which all help. Yes, I'm on plenty of meds. too. I'm 55 and just "threw in the towel". It was the most effective pain treatment as of yet. It brought my pain level down significantly. Do you take any sleep medication. There are many options available. Have you tried Temazapam?

Hope this is of some help. Hang in there, as it can get better. Bonnie

I have had CIDP for 15 years. Mine is extremely aggressive even with massive IVIG treatments everything else that can be done I am in a motorized wheelchair have partial paralysis of my diaphragm and therefore use oxygen. During my years, I have had and still do have consistent issues with pain as well. Can you be more specific about where and what your pain is? Depending on exactly where and what the pain feels like you have many more options. And sometimes a combination of medications can be very helpful.

I would strongly recommend against a spinal stimulator. Most physician don't want you to do one with CIDP because it is often times not much help, carry significant risk, and can even make the situation worse. 12 years ago I personally did a trial stimulator and within 4 days had the temporary one removed and was much worse off than previous. When I did it they thought it was going to be the answer for the type of pain associated with CIDP but now that is no longer the recommendation.

If you aren't already seeing a pain specialist that should be your first step. Make sure that pain specialist you use is familiar with CIDP its complications and your current disease state and most likely progression of your particular situation. You may have to interview more than one pain specialist to get one who truly understands what is causing the pain and therefore is better able to treat it.

I have consistent and horrible pins and needles pain in all four of my extremities. I don't mean it's annoying it is painful and there is no way you could even attempt to sleep with that pain at the level of mine. I have found using a drug called Lamictal greatly reduces the pins and needles pain. It makes it tolerable. Lamictal is often used for epileptic patients. What it does for pins and needles pain is literally interfere with the message that goes to your brain instead of masking the pain. I also have stabbing pains in my joints, it is much worse in my hip joints because I am in a wheelchair, so i use Marcaine injectables in my hip joimts once every four weeks. Marcaine is a numbing medication-it is not a narcotic. Most people who use Marcaine injections also use steroid as part of that injection and can often get three to four months of pain relief from it. For numerous reasons I can't add steroids to mine so I go more often than most people.

I have spasms in my legs and arms that literally make me shake and limit even more the control of the muscles I have that do work. I use a medication called baclofen to stop the spasms. By stopping the actual spasm the pain in those muscles from overworking from consistent spasms also gets better. Baclofen is a medication specifically meant to treat spasms it is not a muscle relaxant or narcotic and is most often used by patients who have cerebral palsy.

Even with the use of the medications I listed above Lamictal, Baclofen and Marcaine, i still have significant pain that without treatment keeps me awake and further limits my daily life. For this reason I use a Duragesic patch that you change every 3 days. Duragesic patches have a strong narcotic called fentanyl. For the first two years that I worked with a pain management specialist, I refused to take any narcotics. My pain doctor wanted me to work in my patch with my other treatments but I refused because I just didn't want to do a narcotic. It is a decision that once I started using Duragesic patches, I really regretted. By using a patch, I am able to get some sleep and have a much better quality of life then without it. Now in my case, if I only use narcotics I would spend my life so medicated I wouldn't function. My pain management doctor worked with me so that I could find a combination that lets me function, takes the edge off the pain, and doesn't alter me or make me very sleepy. If you use a Duragesic patch properly, there is no hi or low feeling that goes with it. It is a consistent slow release of medication over three days. You do have to be careful to not get overheated and to watch yourself carefully if you get a fever because your body temperature will increase the amount of narcotic you get. If you use narcotic patches, you need to wean off of them so you have no side effects from your body being adjusted to the level. For those who aren't aware your body being adapted to a medication is not the same as an addiction. I'm only addressing this in my response because I am sure that someone will bring it up in a reply. Using fentanyl in any form besides a patch for any length of time, you can become easily addicted to it. Properly using a Duragesic patch with continued medical oversight, it is very difficult to become addicted to. If a Duragesic patch is not used exactly as prescribed, then it will be easily addictive and extremely dangerous. People who abused patches will literally lick them to get high or put on too many therefore getting too much drug. In both instances it can be deadly.

I hope some of the information I provided will assist you. I understand how hard it is to function with both pain and therefore lack of sleep.

I’ve had CIDP for three years. It is an autoimmune disorder and a spinal stimulator is not recommended. My neurologist informed me that The auto immune system will look at the implant as a foreign object and attack it therefore making things worse even internal infection’s. I agree find a good pain management doctor. My guy didn’t even know what CIDP was and continues to pursue having me have the spinal implant procedure done. I need to find a educated Dr for CIDP. In the meantime I continue to meet with my neurologist every 2 to 3 months to follow up on my steroids and I GG infusions which I get weekly. I have made progress from paralyzed wheelchair a walker and now able to walk with a cane and drive a vehicle with handheld device. My concern is plateauing is this going to be it. I continue to have stabbing and burning pain 24 seven so I do understand the severity of what everyone is going through I wish there was a cure for CIDP. Unfortunately there isn’t so do I you can to keep moving Swimmin walk if you can stationary bike yoga marijuana opiates whatever works for you prayer has been very important to me I pray daily And ask God for his well every day that his will will be my healing amen. Good luck love to all JUTTY

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