Trying to figure out if I'm having a flare up
November 11, 2016 at 4:14 pm
Good afternoon all, I am status post CIDP dx. Initially diagnosed in October of 2011, I’ve gone a on a crazy ride since. I’ll try to make it a brief overview of how things have gone and then ask my question at the end.
On September 26, 2011, I awoke for work (police officer) and was unable to move my legs. My wife initially thought I was playing around, soon realized that I was not kidding. My legs tingled and even though I was, out loud, telling my legs to move, they wouldn’t. After 10 days in the hospital, a dx of cidp was made. I’ve had ivig 3 times and plasma pharesis twice. While initially trying to find out what was wrong with me, an x-ray/mri showed that I had avascular necrosis of both sides of my hips. Had my first hipost replaced in June of 2012 and the other in July 2012. By the way, at the onset of all this I was only 38 years old with no medical hx. The next big event came when I was attempting to have a pain stimulator implanted in my spine. I went into the hospital on 2-28-13 for the operation. An hour and a half into surgery, the doctor meto with my wife and said that something had happened. I had had a spinal stroke at t7-t8 and crashed on the table. I was brought back, but doctors advised my wife that I may not walk again. Spent a while in a nursing home and was able to walk with an assistance device. As if that wasn’t bad enough, my left hip replacement failed and I had to have it replaced in June of 2013. Wasn’t really happy about having to go under again, but, at the time, I was praying a lot and counting on God to help me through it, which he did.I think that’s it for the back story. One other thing I just remembered. I have low testosterone and gave to inject myself every other week with straight testosterone. Not sure if any have to do with each other.
Fast forward to 2016. I am on a ton of drugs to control pain, etc. 2 forms of morphine, gabapebtin, flexoril, Ativan, zoloft. Even on all that I still am nowhere near pain free.
Now the question part…I can’t sleep at night. I could be dead tired, but the tingling in my legs and pain just won’t let me sleep. I eventually have to become completely exhausted and that makes me sleep through the day hours. It’s a vicious cycle. Over the last 2 days, I have been having increased numbers of muscle spasms ,but only in my left leg. Some so strong that if someone were close enough, I fear it would knock them out. They became increasingly violent. I haven’t felt quite this bad since the initial onset in 2011. Is this a flare up? Also, to the people using medical marijuana, what symptoms do you get relief from and to what extent ? I should have my MM card within the month. I’m tired of taking so much medication!!! How much medication does the mm eliminate, if any? Last question….I realize that everyone’s bodies are different, but does this sound like a flare up and if so, how long will it last ? Any help would be greatly appreciated. I’ve seen some amazing, world recognized neurologists, but I still don’t know exactly what the hell is going on with my body, what caused it and how far it will progress. To anyone dealing with this or any number of the mimicking diseases, I do feel your pain and I hope that you have more good days than bad!!!! -Joe
December 12, 2016 at 7:59 am
I’m a nurse with CIDP and similar problems. Great difficulty getting to sleep, leg pain and burning in both legs and spasms in my right leg. These symptoms can be common as the disorder progresses. I have very good days where I am active and can work around the house and go out to the store. Currently I’m having a challenging time where I have been sleeping most of the day, need to use the walker/Wheelchair and have greatly increased symptoms including shortness of breath.
According to my doctors and research this is “normal” for what we have. There is really very little new research on CIDP unless you are in a clinical trial.
What works for me:
IVIG infusions: 250 mL of normal saline followed by 15 grams of 5% Octagam given over 4 hours. I have this every 4 weeks and the infusions are given 2 days back to back. The side effects were too many to infuse the full dose of 30 gm in 1 day. Splitting the IVIG over 2 days and pre loading with 250 mL of normal saline has fixed my adverse symptoms. IVIG works very well for the fatigue, breathing problems, pain and spasms. Unfortunately, it only lasts about 2 weeks. I pre medicate with 1000 mg of Tylenol and 50 mg of benadryl.
Leg pain: walking and standing of the most affected leg.
Leg burning: going out on the porch and standing barefoot on the cold floor. In the summer I have a fan blowing on my feet, but the cold floor works best.
Sleeping: I take 300 mg of gabapentin at 7pm. Then when I cannot sleep I take 50 mg of benadryl and do something around the house until it starts working in about 30 min. If I am really tired and shaky, benadrl doesn’t work and
a shot of whiskey or rum works best. As a disclaimer you are not supposed to mix gabapentin with alcohol. I like your idea of the MM. I’ll have to look into it.
As a side note, I was a first responder after 9/11 and the doctors at NYU say there is no link between CIDP and CIDP. I’m interested if you were there and if there are others that have developed CIDP.
Thank you for posting your question, it feel good to write this out.
Have a beautiful day!
January 6, 2017 at 10:32 pm
When I’m hurting I will eat edible’s made with CBD’s. it helps gives me a body high. helps the pain.
I myself do not like head highs, but I suppose that would be even better.
Just so you know Most Dr’s will test you and if you test positive, they will refuse to prescribe you any medications…. that was my experience.
December 12, 2016 at 9:51 am
The first thing you need to do is to eliminate all those medicine for say a week to establish the bare minimum you need to function. I’m willing to bet half your problems comes from the side effects of the medicine and clashes. It is better to be in extreme pain for a week, but to establish what you really need. Let me know how you do. Eat loads of spinach and potatoes, try that.
December 12, 2016 at 10:13 am
Eliminate the meds for a week? Are you seriout? First off, it would take me at least a good month to be weaned off of everything. If I was to just stop, my body would not be happy and pain would be the least of my worries. Trust me, I’m not a big pill popper or druggie, but I do trust my doctors. Hell, if it wasn’t for my doctor, I wouldn’t even be here. He brought me back from death on the OR table 2-28-2013.
If I didn’t have a chronic condition(s), I may agree with your theory/opinion. It is yours and you’re surely allowed to have it. But between CIDP, the cord compression and things that the stroke has permanently left me with (or without), it’s not just as simple as starting over. I agree that everyone should have an open mind and try to progress, but when progress isn’t an option and just holding where you are is what you hope for , things are a little more complicated.
As for knowing what I “really need,” I’ll tell you. Because of asshole druggie that abuse rx meds, the states are reducing the mg of opiate that can be prescribed per day. What I was on was 60mg x 2 morphine Extended Release and 30mg x 6 morphine Immediate Release. Because of the newer guidelines, I have been cut back to a maximum of 4 immediate release morphine a day. What that computes out to is potentially 8 hours a day where I can’t take a medicine that will cut into my pain. And just for the record, I have a decent pain tolerance. I have tats, I have “relocated” a dislocated shoulder without even going to the ER, so it’s not that I have no pain tolerance. I just have so much crap wrong with me that my pain , even with all the previous meds, was still between 3 and 5. AND I WAS HAPPY WITH THAT !!!! I’m hoping my MM card comes soon, so I can at least try and see if it will work as well for me as it has for others. So, short of that or my insurance company stepping up and paying the thousands a month for Subsys, which I highly recommend, it’s going to be a long winter and I’ll be on the walker longer than I’d like.
Angela, IVIG put me in ICU twice, for a combined 11 days. We don’t get along !! LoL LoL As for the Benadryl, I know it works great on my kids when they have a cold. But for a sleep aid for me, I’m pretty sure that the Ativan is a bit stronger. LoL
I appreciate you both commenting and I don’t mean to sound negative, but this has been the story for 5 years. Things have been switched up, alternative meds tried, alternative therapies tried and here I am. I wish you both a Merry Christmas and hopefully a less painful new year !!!! -Joe
December 12, 2016 at 10:54 am
I don’t care what the pain is, i would seriously do it. You should ask yourself, why aren’t you improving or stabilizing or easing into progression but getting really worse? If you google zoloft side effects, it says tremors, so perhaps you can try to eliminate just zoloft and see if it doesn’t improve your tremor issues and report back?
December 12, 2016 at 11:07 am
You are familiar with CIDP and how it works, correct ? It is a progressive, chronic, neuromuscular disease. If ithe weren’t chronic, it would be GBS. I have to ask this, do you have CIDP? And how can you REASONABLY tell someone with chronic pain that you don’t care what the pain is? Have you missed any of your children’s youth because you couldn’t get out of bed ? Spent holidays in a ball because it hurt to move ? If you haven’t had pain that severe, and not withstanding your wildly insensitive comment , I really don’t want to hear from you. There is no need to further post here, because I not only don’t value your opinion, I don’t value you as a human. Merry Christmas, you insensitive prick!!!!!
December 12, 2016 at 11:28 am
Thanks for the reply, just try it.
December 14, 2016 at 6:59 am
I hope the MM works for you. I spoke to my brother in CA. He was prescribed MM for chronic back pain and he said that it changed his life. He was able to cut down on the other pain meds as the MM takes the pain away without all the other side effects.
I wish you the best as you look for what works for you.
Nasdaq7, pain is a very personal and real problem. Please be kind.
peace, love and joy,
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