Can not get relief/frustrated!!
AnonymousMay 1, 2009 at 2:05 pm
I have posted before under pain pills/antidepressants. It is a long story, but will shorten it. I have CIDP, get IVIG treatments once monthly. I was on infusions for a few years and it was interrupted for 5 months due to insurance reasons. I started back up with twice a week to get it back in my system, this has been since Christmas. I have had terrible pain in my feet and hands, along with swelling in my hands. I found out I have a mild case of arthritis, but not enough I would think to cause this much pain and swelling. I went to a Rheumatologist and it is not rheum arth, just osteoarthritis He just put be on some super Motrin, that did not help. My neuro has tried all kinds of antidepressants, upped my dose of IVIG, I get it once a week now for a month, and no relief. I take Neurontin 2400 – 3200 mg day with no relief. He is baffled. He now thinks that maybe it is the Neurontin causing edema (I’ve been on it for years). He wants to wean me off of Neurontin and try Topamax. The only thing that relieves the pain is Vicodin or Percocet. I take my husband’s about 1-2 times a week. My Neuro will not give them to me even though I told him I took my husbands. I am at my wits end. I am tired of laying on the couch all the time in pain and being so depressed. My nurse says that Michigan is the worse state for nerve pain (so where do I move to?). Has anyone else experienced swelling and severe pain?? I don’t know who else to go see to explain the swelling and severe pain.
Clare in Michigan
AnonymousMay 1, 2009 at 2:38 pm
You tell your neuro what DOES help the pain, and he ignores what you told him works…THAT RIDICULOUS!
Confront him, and ask him why he thinks you should be in pain, when there are SO many pain medications…that’s what they’re there for–to alleviate pain.
Do you also have a Primary Care Physician? I would suggest going to him, update him on what’s going on, and tell him “enough is enough”. There is NO REASON you should be in pain. I have been on Vicodin for years now–so what? When the Neurontin doesn’t work, I pop a Vicodin. Sometimes, if I don’t have much work to do, I will take a Marinol or two–it makes you “forget” you have pain. (My doc tells me I can take up to 3 at one time–I did that once, and I was zonkered for hours…)
I have a very good neuro, and a very, very good PCP. If there is EVER a problem, they take good care of me. This CIDP is a nasty disease, and you shouldn’t have to be in pain. I know that if I ever get to the point that Vicodin doesn’t alleviate my pain, then I trust my doctors to go the next step up for a pain-reliever. YOU SHOULD BE IN THE SAME POSITION, TOO.
That is nonsense–get the Vicodin or Perc ordered.
AnonymousMay 1, 2009 at 2:54 pm
Kedaso – Since you have been on Vicodin for a few years does it get addicting or do you find you have to use more of it? I do have a good PCP, but unfurtunately he does not like to give out Vicodin either. The only time he did was when I had shingles. I have not been to see hime since I have had the really bad pain and swelling. I have called him and made an appointment with him for Friday. Hopefully, he will give me a prescription. My Neuro is a good doctor, but he is hesitant about narcotics. He wants to find out what the real problem is, but in the meantime I don’t know what he expects me to do for the pain.
Clare in Michigan
AnonymousMay 1, 2009 at 3:19 pm
When I first get up every morning, between 3am and 4am, I first take
2 Vicodins for pain, 1 Tigan for nausea, (I am on chemo), and 1 Mestinon, (a drug usually used for Mythenia Gravis, however, my neuro read in one of his journals that Mestinon can also help when CIDP hits your autonomic system, which it did in me). I AM DETERMINED TO HAVE A NICE DAY.
I may not use another Vicodin until the next morning. However, if I do get some pain, then I WILL take some more Vicodin. So what? And my doctor feels the same way, since I have had CIDP for so long, and am on a slow, steady decline.
I don’t think I am addicted–I don’t crave the drug. Some mornings, in a “brain fog”, I have forgotten the Vicodin…
Even if I was addicted to it–the feeling is “so what?”. I will probably be taking the Vicodin, if not something stronger, to the end.
Ask your doctor if you can try Marinol, to see if it works for you. My doc ordered it for me for nausea and loss of appetite, but my neighbor swears by it for his severe back pain. Like I said, it makes you “forget” you have pain.
And it is not a narcotic. Ask him that you’d like to try it, since he doesn’t want to order you drugs that you told him worked for you–the Vicodin or Perc.
AnonymousMay 1, 2009 at 8:53 pm
Hi Clare! So sorry to hear that you are in alot of pain. Many doctor’s don’t like giving narcotic pain meds. My husband freaked out on my doctor and now I have the pain meds. I take tylenol 3 with codiene but it’s restricted for only as needed. Telling your Neuro that you take your husbands was a big mistake! The Neuro might be thinking that you are getting the pain meds for your husband. So beware what you say to your doctors. But keep telling him that you are in severe pain and going nuts at home and can’t sleep anymore because of it.
Hope he will end up giving you something for relief soon! I had an experience with a new doctor down here in NC when I mentioned being on Zanax of 2.75 mgs in PA when I first moved here. Told the man I needed my RX for it and showed him my records of being on that high of a dose. He got all nasty with me and told me that he was not giving me any kinds of drugs like that. That is why I am now only on .25 now. The jerk wrote in my records that I may have a problem with Zanax and warned the doctors in my records not to give me Zanax! My regular doctor will only give me .25mgs because of what that jerk wrote. My husband had to step in a few years ago and they finally gave me something for pain. But I only get so many a month. One thing I do not have is an addiction problem. Never had an addiction and have alway’s been able to stop taking my RX’s with no problems. But these doctor’s watch out for signs and when they hear you say you take your husbands pain pills. That gives them a reason for a red alert.
I now pay the price for it too! I did fantastic when I was on Zanax. But now I take more than one RX of different things when I could not be taking as many if I was on the Zanax. But I don’t complain anymore about it! Just be very careful next time when you talk to your Neuro. Might pay to get a family member to go with you and let them tell how you are doing. At least then you have an aliby! Feel better soon! Hugs
AnonymousMay 1, 2009 at 10:03 pm
One of the things I’ve so far been very grateful about is that the only pain I have is in my calves when I stand after a period of inactivity (like sitting at the computer). It feels like it does when having overdone things in a workout.
But I’m mainly replying to your post because I have recently experienced swelling in my ankles. I pushed myself a little hard going out trying to accomplish some errands with my walker, going to the bank, etc. By the time I got home my ankles were swollen, mainly on the top at the joint. I haven’t had swollen ankles since a few years ago when I needed to be put on medication for hypertension. What does it mean? I’m not sure. Maybe I need to focus a little more on regular, yet gradual physical therapy to strengthen my ankles so a bit of extra activity won’t be so shocking to them, plus try to plan things so I won’t overdo things. Prior to the CIDP, if I had overdone things I would have just been tired, I wouldn’t have had any swelling……
AnonymousMay 1, 2009 at 10:12 pm
I can sympathize with the pain right now. I have been having extreme pain around my chest and back to the point where it is even painful to wear a bra. I went to the doctor last week and they said inflamation in my chest walls and ear infection, so antibiotics, decongestant and muscle relaxers. Well I finished all the medicine and it seemed to ease up until today and now the pain is back full force again. The doctor hates to prescribe anything because he isn’t sure if it is pain due to GBS or something else. I am to the point I don’t care what the reason just make it go away.
AnonymousMay 2, 2009 at 4:35 pm
I’m also in Michigan (Southfield). Doctors are trying to get away from prescribing certain medications, but they also have to understand your quality of life is being affected.
When you mentioned you told the doctor your were taking your husband’s meds, I had to laugh as I’ve been in a similiar situation. I was taking Vicodin for severe leg and back pain and it stopped working. My brother gave me a Percocet and it worked immediately. My PCP didn’t want to prescribe Percocet and I calmly advised her that I understood her position, however, I’d have to find other ways to get it. I wasn’t trying to bully her into giving me the prescription, but I was in tears daily and could barely make it down the hallway at work. She prescribed the Percocet and my pain has almost totally disappeared. I haven’t had to take a Percocet or Vicodin since last December so it was obviously a temporary issue.
Doctors are there to help us manage our pain and they’re not doing their job if you’re in constant pain. Don’t get me wrong, doctors have to be cognizant of people asking for narcotics for the wrong reason, but if they know your history, that should be reason enough to prescribe the meds.
I know it can be difficult changing doctors, but you may need a second opinion.
I hope you find relief from the pain.
AnonymousMay 2, 2009 at 8:53 pm
Thanks for the support of this board. It is so helpful to get input from others that understand what you are going through. I do have a name of a pain management doctor if my neuro does not want to change his mind about the narcotics. It’s funny, but I too was almost going to tell him I would buy them off the street, but I told him I took my husband’s. It didn’t seem to make much headway with him. He is starting me on Topamax and weaning me off of Neurontin. Today I had 1 Topamax and 1 Neurontin then took a Vicodin when the pain started. I spaced them all well enough apart. I took my 13-year-old daughter out shopping and started feeling dizzy and lightheaded. It must be getting use to the Topamax. I did come home and stayed there. Doctors don’t realize that we have lives that sometimes can’t stop. My daughter is graduating 8th grade and is valavictorian(sp?) of her class and also is making her confirmation. Needless to say I have a lot of things to get done. My husband works long hours. I need to be able to function without pain interferring every day. The next time he says no to narcotics for pain, I will hand him my list of things that I need to get done and tell him to pick up my daughter and finish the shopping with her.:eek: I’ll bet he’ll be writing that script pretty fast then. Thanks to all and good health to all.
Clare in Michigan
AnonymousMay 3, 2009 at 6:20 am
Hi Claire! Keep a diary of your daily activities to give to him. Write down your pain levels on a scale of 1-10 10 being the worst. Write down the things you can’t do because of pain. Nights you can’t sleep etc. And please do not mention going out buying the drugs on the street! You will never get another RX for anything addictive. Once they put that in your records it stays in your records. I think a diary log each day before seeing him and having a family member going in with you your next visit is the best bet! Hope the Topomax though works! Hugs
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