I am on the fentanyl patch, 60 mg Tramadol every 4 hours, 60 mg of morphine, 1000mg naproxen, and amitripyline plus several other meds and sometimes this doesn’t touch the pain. Medical marijuana was not an option due to being a retired (because of health issues, CIDP) police officer. But my neurologist from U of M in Ann Arbor recommended med marijuana. It is fantastic. I have reduced my pain meds by 75%. I also don’t take morphine anymore. Two puffs in the morning and 3 at night, no pain. It is truly a miracle. But it must be indica. If you get sativa it makes u feel every pain sensation. Indica must be the larger %. And yes, what you are feeling is how we all feel. It is a terrible disease but you can feel better.
Hi Mark, I am going to look into the med marijuana. I live in Australia so I don't know if it is legal here. Although I heard they were trying to make it legal. They have places where the junkies can go. When I read how much pain killers you are on it makes mine like a flea bite .I am glad you are on marijuana and that is helping you. First thing on Monday I am going to look into it. Shirl
Mark said:
I am on the fentanyl patch, 60 mg Tramadol every 4 hours, 60 mg of morphine, 1000mg naproxen, and amitripyline plus several other meds and sometimes this doesn't touch the pain. Medical marijuana was not an option due to being a retired (because of health issues, CIDP) police officer. But my neurologist from U of M in Ann Arbor recommended med marijuana. It is fantastic. I have reduced my pain meds by 75%. I also don't take morphine anymore. Two puffs in the morning and 3 at night, no pain. It is truly a miracle. But it must be indica. If you get sativa it makes u feel every pain sensation. Indica must be the larger %. And yes, what you are feeling is how we all feel. It is a terrible disease but you can feel better.
Hi Yoshi, It not so much that my legs won't stop moving, they fell like they need to be stretched .I keep trying to stretch them which in turn gives me pain. It's a vicious circle.
Yoshi said:
Shiri
I understand your issues there are nights that my legs move so much I don't sleep. I was diagnosed just over 2 yrs ago just woke up one morning and cold not walk and good thing for me my Neuro believed me and never told me it was in my head. Showers can take me 30 to 40 minutes and I live alone - I need to make sure that I always bring a phone with me. I have been on IVIG treatments every 8 weeks since early 2012 (this was after 3 mons in a SNF and 3 weeks in a rehab hosp). The IVIG does help and so does the medication for restless leg. As far as the pain there is not a second out of the the day that I do not have pain but I do see a pain specialist. So one thing I can say if you have to go for the second opinion or third if need be.Its important to find a doctor that can help you that you trust- just keep pushing I know it gets hard. But there are always friends out there....
Hi Shirl,
Has your doctor tried prednisone? I know it doesn’t work for all cases but it was a miracle drug for me.
The IVIG courses helped, but within a weeks time of each treatment I was going downhill and fast. Major joint pains and aches affecting my sleep, tired all the time, severe weakness (couldn’t stand up unassisted) and I took a dangerous fall backwards.
Prednisone has it’s own risks, but at least I can live life more normally now. I’ve tapered back to 15 mg a day, 10mg is the next step.
Hope you are feeling better soon.
Cheers,
TCp
TCp
Yes I was on 40 mgs of Prednisone for almost a year before my doctor was able to tapper it down and then finally get me off of it. It did help in the early stages but after a while... I have been taking gabapentin and that does help the nerve pain somewhat does not take it a away but helps. My doctor is changing my IVIG from every 8wks to every 4 wks so we will see what that does. Hard part is it is two days in a row for somewhere between 4 and 6 hrs makes for long days. Hey thanks for your help...
Yoshi
Just too frickin funny Bill. But no thank you those hoses aren't worth anything. I bought one myself. lol
shirl3 said:
Hi, I know that feeling. I'll sign your petition but only if you include Paypal as well. LOL I have just woken up again and you and Akamalaccas have really made my day. Thank you.
bill2503 said:Even with 5 days of IVIG every three months I still get overwhelming fatigue interspersed with mind numbing insomnia sometimes together (had to stop putting my wallet in my trouser pockets because 3am tv infomercials and a handy credit card are just too dangerous in a sleep deprived state and im petitioning ebay to shut down after 10pm)
Shirl
I know it sounds dumb to say I GLAD to hear your story and several of the responses in this group. IT'S MADE ME FEEL NORMAL! The numbing fatigue, the constant pain and ache and soreness, insomnia--a recent development! I meet with my new primary dr. on Wednesday--long awaited appt. She's supposed to be very good. We'll see. I've see two neurologists in my city, have had the full prednisone infusion treatment. Now that its done (quit after down to 4 mg every other day), symptoms are gradually returning. Depressed--how can one NOT be!!
Queen Bee
My name is Stephanie Long and I am new to this but my pain is gonna get worse I don’t know if I will be able to stand it! I have had 2 IVIG treatments and for a week and a half I was in terrible terrible pain. Help!!!
Hi Stephanie: I am sorry U R in so much pain, aren't you on Gabapentin or some pain medicine. Why do you think your pain is going to get worse? There are other treatments besides IVIG, it is kind of trial and error, what works for one person doesn't always work for another. IV IG was the only treatment that worked for me, I will soon be going in for another round of 5, I have been fortunate not to have any side effects from it. I hope your neuro finds something to help your pain. My prayers are with you.
MAMABEAR
Hi. I am on 2700mg of Gabapentin a day for nerve pain, tizanidine ( generic for Zanaflex) 4mg 3xday, it's a strong muscle relaxer and 500mg of hydrocodone as needed for pain. Just this month the tizanidine was increased from 2 to 4mg 3xday, it has made a great difference in my pain level. I still have my vicodin days, but not as many. I have just started IVIG treatments, have had 2 and have felt worse after each one. I had to be approved thru Public Aid for treatment. They approved 1 day a week for a year. My neuro scheduled 4 treatments. Had to skip one because I had phlebitis. I hope with time the treatments will work because IVIG is the only treatment my neuro will do. Talk to your neuro about your pain, there are so many drugs out there he could try on you. Just don't give up. Good luck.
Jordon
H iyes I am taking 3200 mg of the Gabapentin for the never pain, the Zanaflex I find I can only take a night otherwise I am totally out of it. I take 2 (4mg) tablets a night to sleep and that will normally allow me to sleep a good 4 to 5 hrs on a good night. I am also on a fenytal patch (50 mgs) for pain plus dilaudid 2mg as needed for break through pain. The IVIG treatments do help I have been doing them every 8 weeks (2 days in a row) for a little over a year and now my neuro has changed the treatment schedule to every 4 weeks for the next 6 months so we will see.I am hoping that my energy level will be better. I understand that the IVIG treatment can be very costly but I believe it does help most. The other thing you can do is see if your neruo will refer you to a pain specialist - I have found that they really help and sometimes not all doctors understand the pain cycles and what works with what type of pain. Good luck and don't give up....
Yoshi
Queen Bee said:
Shirl
I know it sounds dumb to say I GLAD to hear your story and several of the responses in this group. IT'S MADE ME FEEL NORMAL! The numbing fatigue, the constant pain and ache and soreness, insomnia--a recent development! I meet with my new primary dr. on Wednesday--long awaited appt. She's supposed to be very good. We'll see. I've see two neurologists in my city, have had the full prednisone infusion treatment. Now that its done (quit after down to 4 mg every other day), symptoms are gradually returning. Depressed--how can one NOT be!!
Queen Bee
Queen Bee-
It is nice to know that I am not alone in this. When my neruro give me the diagnoses I did not know what to think. Of course at that point I could not walk, stand up or even feed my self. Not many people understand when you try to explain the numbing fatigue, the constant pain or even the aches, soreness, stiffness etc. I was on on prednisone for over a year 40 mg until I was able finally get off. Depression is a major problem and my neruo recognized this right away made sure it would not be a issue.. You might want to see if your primary would refer you to a pain specialist as they are most times the best in helping as least with some control of the pain - it does not go away by any means but it helps a little ..
take care and good luck
Yoshi
Thank you Yoshi, I am going to look for another Nuero. The one I was seeing told me I was one of a few that couldn't be helped. More or less said "there's the door and close it behind you" I am so glad I found this site. You have all been a great help. shirl
Yoshi said:
Queen Bee-
It is nice to know that I am not alone in this. When my neruro give me the diagnoses I did not know what to think. Of course at that point I could not walk, stand up or even feed my self. Not many people understand when you try to explain the numbing fatigue, the constant pain or even the aches, soreness, stiffness etc. I was on on prednisone for over a year 40 mg until I was able finally get off. Depression is a major problem and my neruo recognized this right away made sure it would not be a issue.. You might want to see if your primary would refer you to a pain specialist as they are most times the best in helping as least with some control of the pain - it does not go away by any means but it helps a little ..
take care and good luck
Yoshi
I have to say WOW!!! I have found a wonderful physical therapist/yoga instructor and she has really helped with trying to regain some balance and my insurance pays for it. My neurologist referred me to a "Pain Clinic" and nothing was done. The Dr. asked me why I was there, even after I filled out the 21 page form!!! My neurologist said she would call him, but the only thing she has done is cut my vicodin 325mg three times a day to twice a day. I am on Gabapentin 600mg three times a day, which does nothing for me, I had tried it before. I also take morphine 15mg twice a day. Sometimes my body feels like it is tightening into a ball and hurts worse midback, but "gentle" stretching helps as well as hot water jets. I feel uncomfortable talking about pain meds to my doctor, wondering if she thinks I am a pain med abuser. How does anyone else approach their doctor? Interesting to note the differences in pot, I have only felt the increased pain.
Nancy
I have gotten the "med abuser" in the past. The right pain management doctor sounds like what is needed.Have they tried a pain patch? They do help some and then I use other pain meds for break through pain.. Something to think about.b I hope this helps
that’s my fear too, but I’m allergic to morphine and several of the derivatives, so it’s had to be try and see. tramadol helped for a while, but it’s less and less effective. I take dilaudid at night. my Dr. said I could take 3 in a 24 hour period. she also told me that my diagnosis is " presumptive" . she wanted me to give theNeuro a chance and I said no. I’ve been getting gradually worse for the past six months and he’s not listening. she has sent a referral to Mayo Clinic. hopefully they will take my case and I can be on my way to feeling better. --Queen Bee
Hi all, I went to see my GP today and I am not a happy chappy I told him about sleeping all the time but he didn't take any notice. I showed him my swollen eyebrow from when I fell over the other week. asked why he didn't give me a head scan. Told me the injury was on the outside my head and not inside.I am dealing with quacks. I told him I want a different Nuero. He told me they would be the same as the one's in the Alfred Hospital. But I insisted and I had a win. I asked him about medical marj No go. "It's like giving me morphine". He then wrote me out a script for 2 mg Valium. Beam me up scotty .I told him I couldn't do this anymore and that I was getting very depressed. He then told me it wasn't depression that I,m feeling .Last night was one of my bad ones.Up and down trying to stop my arm and legs from needing to be stretched.I am aching all over from the effect..To day I found my bra's in the freezer. I don't remember doing that. lol. Yesterday I found my pills and a bucket on the coffee table .I am beginning to think I might become a danger to myself. Thanks for listening guys
Hi Napper4, I was born with it. I have never walked normal (whatever that is) As a toddler when I tried to walk I couldn't. I was told I was 2 and a half or 3 before I finally walked. My parents took me to different Drs but nobody knew what was wrong. I am talking about the late 40s early 50s. At the age of 23 I was seen by the head Nuero at the Alfred Hospital. After numerous tests he told me I have Spino Cellebar degeneration. (sorry about the spelling) He told me I would be in a wheel chair by the age of 30. I am 65 not in one yet but not far off. A professor at the same Hospital told me a few years ago that I now have CIDP. He said after giving me 5 straight days of IntergramP and once a month for 5 months that it didn't work and that I was one of the few that couldn't be helped. More or less "there's the door and close it after you" Since then I have gone down hill in a hurry. My local GP is a joke. I went to him yesterday .I posted on here all about it last night. I have had an hour of sleep all night. It is now 6am and I am that tired but cannot sleep.I took 10 mg of Valium and that was the hour of sleep I got. I don't know how much more I can take. Between these diseases and the quacks that don't even bother to learn about what I have got. I have just about had it.
napper4 said:
Ataxia can be either a symptom or a disease. As a disease it is genetic. Most CIDPers have ataxia as a symptom. Messed up nerves in your feet cause you to walk with an ataxic gait. Unless you have had some sort of genetic testing, you probably have it as a symptom, not the actual disease.
Hey Shirl-I went to see a hematologist/oncologist today, a referral from my neurologist. I have CIDP and anti-mag. The doctor told me she knows nothing about either disease because they are so rare. The same thing happened when I was referred to a pain specialist. I was just telling my husband tonight, that I wished I had something more common so that even the referral doctors don't look at you with a blank look on their face and wonder why you are there. Peace nancy
shirl3 said:
Hi Napper4, I was born with it. I have never walked normal (whatever that is) As a toddler when I tried to walk I couldn't. I was told I was 2 and a half or 3 before I finally walked. My parents took me to different Drs but nobody knew what was wrong. I am talking about the late 40s early 50s. At the age of 23 I was seen by the head Nuero at the Alfred Hospital. After numerous tests he told me I have Spino Cellebar degeneration. (sorry about the spelling) He told me I would be in a wheel chair by the age of 30. I am 65 not in one yet but not far off. A professor at the same Hospital told me a few years ago that I now have CIDP. He said after giving me 5 straight days of IntergramP and once a month for 5 months that it didn't work and that I was one of the few that couldn't be helped. More or less "there's the door and close it after you" Since then I have gone down hill in a hurry. My local GP is a joke. I went to him yesterday .I posted on here all about it last night. I have had an hour of sleep all night. It is now 6am and I am that tired but cannot sleep.I took 10 mg of Valium and that was the hour of sleep I got. I don't know how much more I can take. Between these diseases and the quacks that don't even bother to learn about what I have got. I have just about had it.
napper4 said:Ataxia can be either a symptom or a disease. As a disease it is genetic. Most CIDPers have ataxia as a symptom. Messed up nerves in your feet cause you to walk with an ataxic gait. Unless you have had some sort of genetic testing, you probably have it as a symptom, not the actual disease.