Pain – What do you do to manage?
AnonymousDecember 30, 2010 at 8:56 pm
I am in month 18 of GBS and I just recently weaned off of the Fentanyl pain patch (yikes, that was hard!). I have since realized that my lower back pain is pretty bad. If I am “up” and about (keeping myself distracted), I tend to manage the pain better. I choose not to take my OxyIR until I take my bedtime meds because I don’t want to be loopy with my kids – been there, done that! :p But, by 3:00 p.m., I am really hurting.
What do you do to manage your pain?
AnonymousDecember 31, 2010 at 4:01 pm
I’m not an expert but you may want to talk to your doctor about getting a longer oral acting pain medication, You may also want to investigate looking at a regiment that would have a lower dosage during the day and a hight dosage at night to let you sleep. Hopefully someone with more expertise will be able to help you
AnonymousJanuary 1, 2011 at 5:49 pm
I have thought so many times about getting off my fentanyl patch or at least trying a lower dose. My pain doc won’t go near this but I think he really doesn’t know how to taper.
Good for you tapering off. Do see about better pain meds to control it. Pain is no fun. At night mine tends to be worse too.
AnonymousJanuary 2, 2011 at 5:53 pm
[FONT=”Microsoft Sans Serif”]~ i still have pain and have been trying to rack my brain to find a medicine that i can take while working (as a cop) – they ain’t going to go for the opioid stuff 😮
i have been reading about nsaid’s — but i feel motrin won’t be strong enough. i see that they now have some called cox-2 inhibitors… celebrex, for example, but it has this nasty little side effect of causing heart attacks for some. while i don’t have a heart condition, i don’t care for the idea–
maybe there are others of the same ilk??
and then there is tramadol which is an opioid antagonist??
essentially i need to find something that i can take while working and still pass a drug test…
AnonymousJanuary 3, 2011 at 2:32 am
I have CIDP and I take Neurontin, also called Gabapentin for my pain. I also take Alpha Lopoic Acid, Cymbalta, and Cellcept. Dr. Tracy from the Mayo Clinic and Dr. Lewis from Wayne State University are my doctors. I’m in the process of weaning off from Neurontin right now though due to tremors in my hands. They were not sure which one was causing it.
AnonymousJanuary 3, 2011 at 5:48 pm
Along with my GBS for 4 yrs now, I also have some other low back issues, I go to a pain management, where I went to therapy to learn physical therapy for my back, I also have a TENS unit when it gets to hurtin, & meds.
I was get injections, but I have deceided to discontinue them. they helped for 6 weeks, but if i did my bending from a chair or bending over I was still in pain, & also for females the coticosteriod injections can cause longer menstruation than the normal 5-7 days it can last 3 weeks, so thats 1 reason & I was unable to do what I wanted , but otherwise I was pain Free. EVERYONE is DIFFERENT. Talk with your DR to see what he/she thinks.
AnonymousJanuary 21, 2011 at 5:41 pm
I have CIDP, severe pain started in Dec. 2010. I started eating Acetaminophen (Tylenol) like candy. This is a great way to ruin ones liver. But the pain was a 8 on a scale of 1 to 10. I went to my PCP and he wrote me a script for daily decreasing doses of steroids. The pain went to a 2/3 on a scale of 10. I did the week routine when I stopped the pain returned at level 8 ! Back for another script of stronger steroids and the same thing happened ! More Tylenol… yummy ! Then I remember my neuro had given me a script for Gabapentin (Neurotin) which I filled and never took after I read the side effects. However, pain being the great motivator it is I started taking the Gabapentin as prescribed and my pain is now 0 > 3 on the 10 scale. When the Gabapentin is gone I will ask for a srcipt for Lyrica which is the more powerful big brother to Gabapentin. This is what I do and it works. This is not a recommendation – I suggest you see your doctor and tell him/her what’s going on. Good Luck.
AnonymousJanuary 24, 2011 at 11:33 am
Tom A, I was scared to take the Gapapentin because of the side effects too. In fact, I have a whole jar of it in my cabinet. I filled the prescription, but did not take it. Did you experience any side effects? I have heard/read that it can make you feel like a zombie.
AnonymousJanuary 24, 2011 at 12:13 pm
Having GBS or CIDP unfortantely can cause fatigue. 🙁
At first the gabapentin does make you very tired but it does get better in time.
There are side effects from any type of medicine but at least I am not experiencing severe pain while taking the gabapentin, I tried to go off of it but ended up crawling to the bottle because the pain was so bad!
Everyone has to try and do what works for them, this disease affects us all differently.
Hope that helps,
AnonymousJanuary 24, 2011 at 12:21 pm
Everyone is different; your reaction could be different then mine. So this is only what I experienced.
1). Absolutely NO side effects except very little light-headed feelings ( like a 6 Oz glass of wine would give). This went away in a day or two.
When I was in my 20’s a doctor over prescribed cortisone for/to me. This caused me to have suicidal thoughts. I love life and this was so out of character for me that I vowed never to take, smell or hold cortisone again 🙁
For decades when asked “Are you allergic to any medications?” I would write ‘Cortisone’. Then 5 years ago when I was 54 I broke my foot (On a tread mill ???). The podiatrist started questioning me about my allergic to cortisone statement because he wanted me to use cortisone. I was embarrassed and reluctant to tell him why. He came right out and said “you had goofy thoughts, didn’t you?” I replied yes and he stated “you were probably overdosed, let me try.” He did and it instantly relieved the pain. I no longer write “allergic to cortisone.” But, that experienced scared me enough that when I read Gabapentin and Lyrica could cause suicidal thoughts I said NO WAY am I going to use it !
Then the CIDP pain started. I tried the Gabapentin out of desperation and have finally got some relief from most CIDP pain. I can even sleep for 6 to 8 hours without waking every 15 minutes from pain. Now I keep some in my car (just in case) I take 300 mg every 5 hours. It is the only thing that gave me full relief from pain. I intend on trying Lyrica in the future. Alcohol is not recommended to be used with it. The only reason “WHY NOT” I could find is it may make the euphoric state a little more intense. I’m a heart patient and I have 2 to 3 glasses of dark red dry wine (Merlot, Cab, Burgundy, etc.) in the evening. I make sure I tell ALL my doctors this and so far not one has admonished me to stop the wine. I have read where others on this forum use Gabapentin for the same reasons. This is not a recommendation, it’s just my experience. Hope this helps.
AnonymousJanuary 25, 2011 at 11:19 am
Thanks Rhonda and Tom for your feedback! Tom, that is one of the reasons that I was afraid to take gabapentin because of the suicidal thoughts issue. I was in a very dark place in the beginning and didn’t want to make things worse. In fact, I tried Cymbalta because of this, and had low blood pressure and had to go to the ER. Meds and me don’t mix well, but maybe I will try it at a low dose.
January 26, 2011 at 9:14 am
Lyrica helps, although I only notice it helping during severe pain-usually the result of forgetting to take them.
Heavy doses of distraction are the best. Also, not dwelling on pain seems to help, therefore I try to not tell anyone I have pain. I have found that most folks don’t really want to hear you complain about it anyway, so why talk about it?
Akin to ‘drunk-dialing’ I feel that ‘crippled-calling’ really lays a trip on the unsuspecting person on the other line, so I keep to myself during bouts of nerve pain and only contact people when I am feeling more positive.
Currently distraction consists of physiotherapy, movies, talking to friends, getting back to guitar-playing, listening to tunes, short walks, whatever!
AnonymousJanuary 27, 2011 at 12:12 am
when I’m in pain… I’m fidgety. I move around quite a bit. stand, sit. I use a hot tub. I also have heated seats in my car. The best was massage therapy. It hurts in the beginning, but it helped my pain and helped me to walk.
Hope this helps.
Take good care always.
January 27, 2011 at 4:07 pm
[QUOTE=lovemyford]when I’m in pain… I’m fidgety. I move around quite a bit. stand, sit. I use a hot tub. I also have heated seats in my car. The best was massage therapy. It hurts in the beginning, but it helped my pain and helped me to walk.
Hope this helps.
Take good care always.[/QUOTE]
I agree ford, massage therapy is outstanding I find the most interesting aspect is finding out how sore I ACTUALLY am. I notice pains that I have put out of my mind such as sore feet….in massage mind over matter stops. However, the amount of relief and relaxation is measurable.
January 28, 2011 at 8:24 pm
alice pointed this thread out to me regarding alpha-lopaic acid….I’ve started taking but finding it hard to follow the empty stomach requirements, I hope to get more organized……however, plenty of endorsements on the thread
I hope you are all managing your pain as best as you can, I know we hurt but I believe laughter has amazing analgesic properties..the whole world could use some:)
AnonymousJanuary 29, 2011 at 11:00 pm
My husband has CIDP and was diagnosed last July. He has been on Gabapenten (2700mg per day) and has recently tried to come off of it and get on Lyrica but the Lyrica doesn’t seem to be helping him at all so now we are in the process of getting off the Lyrica and back onto the Gabapentin. At least the Gabapentin would keep the burning sensation to a minimum but the Lyrica doesn’t seem to help him at all.
AnonymousJanuary 30, 2011 at 9:22 pm
Hello everyone. I was diagnosed with CIDP 5 years ago after having symptoms for approximately 18 months and Rheumatoid Arthritis just this fall. I have an excellent neuro that I work closely with.
For pain management he started me right out on antidepressants. I can tell you that this did not thrill me in the least. Especially since my husband is a psychotherapist and I am a second grade teacher, we both are well educated on “antidepressants.” HOWEVER, they have been they best thing to happen to me in helping to manage my day to day pain. I do take 90 mg. of Cymbalta. I take them in the morning because they do have a tendency to wire me up. I started out on 30mg and progressed to 60mg and now of course I am up to 90mg. I have been taking Cymbalta for 2 years and have only some stomach side effects which happened at the time I began taking them 2 years ago. Those side effects did dissapate. I would recommend antidepressants for pain control. I tried a few others earlier on, but they did not work as well and they cause horrid nightmares and sleepwalking incidents!
I am infused every 7th week with 90g of gamunex. Because IVIg has a half life, my neuro feels that infusing someone every week or two weeks, is not in the best interest of the patient or the best use of the medication for the disease. I cannot tolerate prednesone and therefore it has never been part of my treatment plan. I was reading someones post a few days ago and she was wondering when she was going to get her “husband back.” It really made me sad. She wanted to know when the IVIg was going to make the pain better, etc. For those who are new to having CIDP, let me share a moment with my neuro with you:
I had been diagnosed for about a year and had been receiving infusions for approximately 9 months. My Dr. had spoken about remission, and stopping and slowing down the process, always reminding me that he would never go away. Of course, I was thinking when it would be in remission, I wouldn’t hurt anymore. WRONG!!! So I ask my neuro very innocently, “So, when do you think I will be in remission?” He smiled and said, “Oh, you are!” Much to my dismay, (because I was still in a lot of pain) and joy (the disease had slowed down!)
I have NEVER been in a wheelchair. I do have permanent nerve damage in both feet and hands and arms. My Dr. made a promise to me that I would never be in a wheelchair as long as I was under his watch and he has held true on his promise so far.
I have bone degeneration in both hands and the start in both of my feet from RA. I came across this forum looking for anyone who may have RA and CIDP. Atl this time, I have only found 2 people in the USA who have both RA and CIDP. They are very unique of course as we all know.
My goal is to put together a team of dr.s who will treat me, but also research as we go along. Some of you may not realize this, but nearly ALL the medications used to treat RA cause demylinating diseases!!! So guess what….our options are limited friends….not many people know what to do with us. My neuro has never had a patient with CIDP get RA before, but he has been awesome trying to find the right RA dr. for me. The first one was not the right one. He was not willing to listen, think outside the box or even want to know what CIDP is. So, six months into my second diagnosis I am on a tear again doing research trying to find out what I can do to help myself and others. I am really interested in the stem cell research that is going on and can’t wait to talk to them about it.
I have 2 appts. this month with 2 different RA physicians which come highly recommended. One is young and looks from his profile that he may be my research guy. The other gentlement was picked because he loved difficult cases. Leads me to believe I may have some luck with him.
To those of you who are seeing GP’s for your CIDP. You need to head to your nearest neurologist.
I have spent hours reading through this forum and cannot thank you all enough for your support and words. It’s so nice to know that there are others out there who are like me.
However, I am a glass half-full person, so unless I am having my once a month “Pity Party”, you will most likely find me on a page of celebrations, proactive discussions, and wherever I can be to help.
I do apologize for the book-length feature. I have five years of CIDP stories all pent-up!!
Is winter almost over?
It’s nice meeting you all!
AnonymousFebruary 1, 2011 at 10:12 pm
Hi Allsmiles and all: I am almost six years post GBS and have significant nerve damage-still need a scooter and have neuropathy (bad) every day. I was on oxycontin and max. dose of neurontin for 5 years but had significant side affects which I didn’t truly notice til I got off all of the meds. Since getting off the narcotics and neurontin I have a great deal more energy and am able to do more than since I got sick, but the pain was terrible. As I wrote before I am in Colorado where medical marijuana (MMJ) is legal. I am registered with the state and go to a dispensary with very knowledgable people who help choose the right strains. MMJ has been proven in clinical trials to help with neuropathy and it works totally for me. I take it before bed and within twenty minutes my pain is gone and I sleep most nights through, though some nights I have to take a little more. It is longlasting for me as well and it is not until late afternoon that the pain comes back. I put up with it for a few hours until I go to bed. It has been a life saver for me and freed me from the need for the narcotics. If it is legal where you are I recommend you try it. I think I am very lucky that it works for me but I have heard from a number of gbs folks that it helps them a lot as well. I think there is nothing worse than nerve pain and know we all have to find something that works-this worked for me. Best to all of you. Jeff
AnonymousFebruary 2, 2011 at 12:30 pm
I was on gabapentin for 3 years. I had very vivid nightmares and slept walked a lot. Very entertaining for the family, but at times became dangerous for me. I did help tremendously with the pain.
I went on Cymbalta 2years ago and it has been like a miracle drug for me. I had a few side effects in the beginning, but it controls my pain better than gabapentin by far.
Again, different things work for different people. I rarely use any other type of pain medication.
I have had CIDP for 5 years now and RA for 6 months. So I don have more pain because of the RA and that is what I am trying to alleviate right now. AsI type my hand a are soooo swollen and ache, but out was 3 degrees bell,ow zero this am…may have had something to do with it!
Take care…talk to your dr about other options.
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