Anti-depressants or Pain pills

    • Anonymous
      April 22, 2009 at 9:21 pm

      Hi, this is my first time on this board. I have had CIDP for about seven years. I have gotten IVIG treatments for the last five years. My CIDP has been well controlled except for some pain flare ups. Back in June ’08 my insurance company decided to stop my infusions with my current home agency. It was a real fight and they ended up letting me go with my current company (long story). I was not getting treatments for five months. I am starting them up again and have noticed that I have a great deal more pain in my feet and hands. I have tried Cymbalta, which worked, but the side effects were terrible. I have tried Effexor, Lamictal, and am currently trying Elavil (have been taking for one week). None have worked, still waiting on the Elavil. The only thing that has helped is Vicodin, but my doctor will not prescribe it for me for the nerve pain. I am on Neurontin 3200 mg/day and IVIG every two weeks. I am at my ropes end with this pain. When I end up on the couch all day with pain I get very depressed. I have a 13-year-old daughter and I feel so guilty. I am thinking about going to a pain management doctor and see what he can do. Do you think I should continue to try antidepressants or the Vicodin? I need some advice from people who know about this awful pain. I am tired of crying every night and feeling sooooo guilty about my daughter. I do have a husband which does help with her. Any advice would be appreciated.


    • Anonymous
      April 22, 2009 at 10:57 pm

      Hi Clare ….

      So sorry you are going through this too …… I also have a 13 year and often feel so bad for him that I am not able to function as I normally would . I dont normally take pain meds unless I just had treatments but dont feel bad about doing what you need to do. I always tell my docs …” Look I have a 13 year old at home that I need to take care of … so I need something to help me function so I can be a Mother ” I know its short term so I try not to beat myself up 🙂
      Kids are so resilant and wonderful and much more understanding than we sometimes give them credit for . Dont feel bad saying ” Look I am having a rough day and I want to be there for you …. tell me what means the most to you today ” If you can only do that …..then its something !
      Keep your chin up ….your obviously a wonderful Mother 🙂


    • April 22, 2009 at 11:03 pm

      Hi Clare,
      I do not have the disease, my 12y/o son does. But I can tell you from 3 years of experience what others on the site do for pain. You are on target dosage wise for the neurotnin. Others use Lyrica as well and have great results. Cymbalta as you mentioned is used by some and has mixed results. I personally am a vicodin queen for herniated discs and degenerative arthritis. Try the search engine with vicodin as the word, there have been discussions recently. a member on here DOES use vicodin for his pain relief. if the pain management doc can come up with something that works better for you than the vicodin, that would be great. But if vicodin is all that works for you, some how you have to find a doc willing to oblige. Good luck in your quest.
      Dawn Kevies mom

    • Anonymous
      April 23, 2009 at 6:35 am

      Hi Claire,

      Welcome to this forum, Sorry to hear you have had such pain, an interruption in treatment is scary. Glad your back on line.:)

      I am one of those that can’t take lyrica for bum lab results on liver but. I do use Neurontin but it doesn’t do the pain away.:(

      Codene products work for me. Vicodin, tylenol with codene or perks 5-325.:D

      my theory why some people do better with the narcotics is as such::rolleyes:

      I believe that not all the pain us CIDP sufferers feel is nerve pain. I believe much of the pain is from tendon stress and or tendonitis. When only certain muscles work, other pick up the duty and things get out of balance and pain comes from that.
      I use Voltaren Gel just below my knee caps and on the achilles and alot of my pain vanishes.

      I also take Ultram or tramadol 300mg Extended relief. Its a synthetic narcotic.
      it works pretty well, doesn’t get you buzzed, although I like the buzz of codene, I am limited on how many I can take week. 2-3 tablets or the labs elevate. I only use them if I do yard work or heavy labor.

      Best of Luck to you.–tim–

    • Anonymous
      April 23, 2009 at 3:00 pm

      Hello Claire.

      Even though my myelin has grown back over the last four years, I’m still in so much pain that I have to take a lot of different pain-killers every day. Even when my illness was at its peak, I used the same dosages of the same pain-killers, the difference is that now the pain often is almost gone most of the time, while I was at my worst the medication only took the top off it so to speak, so that I was able to keep my mind occupied with other thoughts than just beeing immersed in pain altogeher.

      Of course I take Neurontin: 600mg four times a day.
      So: in the morning 600 mg Neurontin plus 25mg amitriptyline (this is the name of the ingredient, an antidepressant, I believe. I don’t know the name of the medication in the US)
      At lunch I take another 600mg Neurontine plus 500mg paracetamol in combination with 30mg codeine. I don’t know if many people is aware of the fact that PARACETAMOL does help nerve-pain to a certain extent, maybe it’s the extra pain Tim mentions in the previous post it takes away.
      At dinner (around 4.30 p.m.) I take the same as at lunch-time and at bedtime the same as in the morning.

      This has kept me from going insane for almost nine years now, so I do believe in it.

      Good luck, Claire!

    • Anonymous
      April 23, 2009 at 5:38 pm

      I take tylenol with codiene for my nerve pain along with gabapentin and clonazepram. And Ibuprophen. The tylenol with codiene is only filled on a needed basis meaning I can’t take one every day. Only as needed for extreme pain. Celebrex is good too! That helps some! Anti-depressants don’t work for me. They just don’t work! I have no choice but to take the stronger meds. If not I am in the ER screaming! Hugs
      Linda H

    • Anonymous
      April 23, 2009 at 9:02 pm

      Thanks for the info.

      Allaug – How did they get the myelin to grow back? I thought it could not come back.

      I called by Neuro and he does not want to prescribe narcotics. He is a very good doctor, but he is very cautious. I did find a pain management doctor that I will make an appointment with to see what he says. My regular doctor (he is an internist) gave me Vicodin about a year ago for shingles, but will not prescribe them again. I have two pills left from my original prescription of almost a year ago. If I was going to be addicted I think it would have happened already. Well, good luck to all and it is nice to have somewhere to go to talk with others that understand. I live in Michigan, just outside of Detroit. I know of no one else with this condition, except for this board.


    • Anonymous
      April 24, 2009 at 6:41 am

      Hello again, Clare!

      The myelin grows back when the attack on the nerves stop. It is a slow process, but it really takes place. In my case, when a very good and intellegent doctor decided to look beyond the CIDP diagnose, and take a bone-marrow biopsy, he found that what caused the nerve-damage was a part of my immune-system called B-cells. I have told about this in many other postings, so if you want to know more, please send me a private message or an e-mail through the Forum.

      All the best

    • Anonymous
      April 24, 2009 at 9:45 am

      I identify with something reported by TJRPT6.
      [CODE]I believe that not all the pain us CIDP sufferers feel is nerve pain. I believe much of the pain is from tendon stress and or tendonitis. When only certain muscles work, other pick up the duty and things get out of balance and pain comes from that.[/CODE]

      To explain. My neuropathy is not CIDP but it is related. Known as Paraproteinaemic Demyelinating Neuropathy – PDN. Mine is IgA. Allaug’s neuropathy is very similar but involves another antibody known as anti-MAG IgM. This is another story but they are sometimes still known in the USA as CIDP associated with MGUS or CIDP associated with a paraprotein.

      I now believe that when the peripheral nerves to my feet were damaged in 1993 the nerve control over muscle contraction for the up/down movements in my feet was altered fundamentally so that contractions are occurring all the time 24/7 instead of only when required for particular foot actions. EG: pressing down on and releasing a brake pedal.

      In the early years of the neuropathy these contractions were relatively mild, except in certain conditions of even small local falls in atmospheric pressure. Then there would be quite powerful upward or downward ‘cramping’ of the toes and pulling along the tendons. When the contraction is strong I am also very aware of it at the ankle joint, not surprisingly as it is the ankle joint that allows the foot to bend up and down. Strong contraction is the norm now and became increasingly so over the past 6-7 years.

      The severity of the contraction has progressed over the years as has the severity of the pain, pain which is NOT neuropathic pain.

      As the muscles and joints of my feet are getting this unceasing, eccentric, involuntary contraction message from the relevant nerves they never have a chance to rest, refresh and recuperate. They are excessively overworked.
      My experience 24/7 and assumptions is that that the pain entirely emanates from these areas of the overworked soft tissue of the ligaments/tendons.

      I am back to the pain clinic next Wednesday. 6 weeks ago I was tried on buprenorphine patches. At first I was going fine but then became very drowsy and then zombified. Had to gradually reduce from 20mcg per hour release to 5mcg. That has not been enough!

    • Anonymous
      April 25, 2009 at 9:17 am

      Hello Clare. I had GBS back in october of 07. I am back to work but currently laid off till May. I use Vicodin for my foot pain.The only way to describe it is if you walk on marbles ,thats how it feels. It is always worst when I work. So I have had a vicodin scrip for a year. I dont take it every day because I know how addicting it is. I take the 10/325. This one isnt so bad for your liver .What I understand ,(now I could be wrong) is the 10 is the narcotic and the 325 is the tylenal or something like it. The 325 is what you want to keep low for that is the number that is hard on your liver.Some will be like 7.5/750 . That one has less of the narcotic and more Tylenal so if you take a couple of those your taking 1,500 of the harmfull stuff for your liver. Like I said I dont use it all the time cause it is VERY ADDicting.I hope by the time my current scrip is over I will be off them for good.

    • Anonymous
      April 27, 2009 at 10:19 pm

      I’m on cymbalta for depression, and I love it for that, but it doesn’t do anything for pain. I take neurotonin occasionally. I highly recommend massage and acupuncture. Sometimes these are covered by insurance, but if not, see if there is a massage or acupuncture school in your area that offers discount services.


    • Anonymous
      April 28, 2009 at 12:19 am

      I have 6 long years of no diagnosis for the increasing pain that left me bedridden. I had to hire ladies to get my groceries and drive me to the doctors. No physician wanted to even discuss treating my pain. I was in such agony brushing my teeth was a chore. After a search I found a good pain/rehab physician.
      Finally put on extremely powerful Fentanyl patch but the CIDP was still progressing/no relief. What did help was the IVIG AND the pain patch. I have days of pain but am so grateful for what I can do. My pain doctor tries to understand my disease.
      Without the IVIG I’d be lost.
      Take whatever helps you have a life. You’ll find some folks are anti-pain meds but its your choice.