severe neuropathic pain

[casperwendy]

My husband had begun developing peripheral neuropathy approx 4 yrs ago. His doctor simply stated that his circulation was good & did not diagnose the neuropathy or treat it.  A different physician later did diagnose.  He has had nerve conduction tests, anodyne therapy, was tried on neurontin, lyrica - both with no positve effect & some neg. side effects.  Last June he was diagnosed with rectal cancer, had 6 weeks of radiation, 2 out of 6 wks of 5FU chemo (ended as couldn't tolerate side effects), surgery to remove the tumor & another to reverse the illeostomy. His pain in his hands & feet is excruciating.  He learned that the MSIR, given for the cancer treatment pain, was able to manage the neuropathic pain.  There has been no etiology determined for the neuropathy. His Lumbar puncture was normal except for elevated protein.  His skin is very hot when his pain is bad, & he is lightheaded & unsteady. They do not want to prescribe MSIR outside of a pain clinic contract, which requires a urine screen first - he has urinary retention/enlarged prostate & cannot urinate on demand so that is not going well. His new PCP gave him Tramadol which very min. helps but makes him vomit.  Any thoughts about med alternatives, or next steps? He will be seeing a neurologist (his third) at Dartmouth in 2 weeks, but the pain is unbearable.  I am so disheartened by the failure of this system to help with this pain.  He does not use illicit drugs but has been treated as if he does. It truly makes one understand how someone may indeed look for illicit means to manage this pain!  Thank you~

[RunningMom]

After reading your second post, it may be benifical for your husband to seek out another pain management clinic.  I can't take tramadol either due to the side effects.  One small dose makes my entire body tremor.  You are doing the right thing by callling the PCP.  Hopefully she will give your husband some type of opioid medicine, even if it's not of the morphine group.  I went to a PCP for help also when I was looking for a pain management clinic.  He treated me for 3 months and made sure I was taken care of.  Good luck and please let us know how things work out.

[RunningMom]

Both Tuck and Mummy3too have given you excellent advice.  I don't have any other advice for you, but I am here for you and your husbands support.  I too, suffer from severe pain.  I know what it's like to be undertreated for this pain.  It's very difficult to deal with.  I can understand the PMP's point of view with the drug testing and they do not usually make any exceptions.  Drug testing is very expensive and perhaps getting a blood test would be benifical to your husband.  Pain management is very hard to come by and they have very strict rules.  Good luck and I hope things work out for you.

[casperwendy]

It is with great gratitude that I read your comments.  Thank you...to clarify a bit - I actually requested a blood test lab slip from the pain clinic.  I dont know why they did not offer that, but we did receive it.  Within a couple of days my husband went by ambulance to the ER - falling, dizzy, unable to walk, temors.  He has never allowed an ambulance before, so I know it was quite bad.  After being there 8 hrs, w/ testing including blood, urine, eegs, ekgs & head scans (he bean vomiting & had a severe headache) they said they could not find anything. When I left for an hour, the ER doc came & told my husband that he must be lying to him, he must be on drugs or alchoholic - neither are true.  No drugs at all, last drink 6 months ago (one) - tho' prior to his cancer surgery a yr ago he was drinking alcohol (2-3) at night to sleep.  He was quite devastated.  He was d/c.  I then researched the compounded cream that the pain clinic gave him - amitriptyline, bupivacain, ketamine - & all symptoms that he had were listed as side effects!  I did provide his med list to the ER but they apparently did nothing with it. I asked the ER doc to run the drug screen blood test & was told that they did not do that.  I asked the pain clinin to run it, & they do not have the facilities.  I was directed to the lab on the floor below, & they only had 2 of the 3 vials that were required so they could not do it.  Can't make this stuff up!  So- we have tried 3 times to get the blood test done, with no success. The tramadol that his new PCP gave him caused him to vomit & have a severe headache all weekend, but he continued to take it as he could not handle the pain without it...I'll be calling the PCP when the office opens today.  Still expect that she will not prescribe the MSIR, not sure what else to do.  Thanks for your thoughts about me, it has been extremely difficult.  I am in the healthcare field (counselor) & grew up with a dad with progressive MS - but this has been something that tears your heart out.  I am most grateful to have found this forum - and greatly appreciate the thoughts, connection & allowing some venting too!

[Tuckamore]

Hello Casper,

Welcome to our Pain Mangement Forum. Your story, rather your husband's story is absolutely heart breaking. I hear and understand your frustration with the system!

In my opinion it is a national tragedy that so many people with irretractable chronic pain go under treated or untreated. I absolutely share in your disappointment with the medical systems failure to treat chronic pain (CP). You are not alone. I hear it most every day on this forum. I wish there were some easy answers. I am sorry that I don't know them.

Although it is similar in my state I beleive the situation is not as extreme. Our PCP treat, manage and prescribed for their chronic pain patients. PMPs do not. However the war on drugs is really a war on physicians. The DEA monitors their every move. They risk losing their licenses if the DEA disagrees with their opiate prescription practices. I beleive they are caught in the middle to a great degree. But my empathy for the physician does not help the ppl with pain that are suffering every day and night, even taking their own lives to avoid another minute of uncontrolled pain. Where is the justice?

Sorry that my comments do not assist with your husbands pain control. Are you otherwise satisfied with your husband's current PMP? If so is he not astute enough to find alternative means of drug screening? Mummy3 suggested one, blood testing. There is also saliva and hair. All these tests would be more costly and probably far from their normal protocol. However if the insurance will cover or co-pay this the clinic should be willing to adapt their policies and procedures. Isn't this what it is all about, treating each person as an individual and making exceptions when they are obviously needed. Where are his rights to be treated as well as the patient that does not have a disability and can urinate on demand?

If the PMP is unwilling to work around your husbands disability than I encourage you to consult another PMP. After all my complaining about the system I can tell you that there are wonderful physicians out there. There are kind, caring and empathetic physicians that treat CP patients and do so with dignity and compassion. They seem to understand and truly care. My wonderful prescribing physician has actually cried with me. I am not alone in this gift. There are others that have also found these God-sent physicians. I encourage you to seek out one. It may take a few calls or a few visits but I honestly beleive that you can locate one.

My heart goes out to you and your husband. Please keep in touch and let us know how your husband (and you) are doing. As difficult as this is for him, it must also be difficult for you. I will look forward to your updates and hope that you can find solutions. We are here for you.

Best of Luck and Take Care,
~Tuck

[mummy3too]

Welcome to the pain management forum! Please understand that no one here is a doctor.

I am so sorry your husband has gone through so much. It is very unfair to know there is something out there that would help with the pain - and because he is unable to give a UA on demand, he is not prescribed it.

Have you or he asked the pain managment doctor if a blood test would work for drug screening? It is probably more expensive - and he may have to go to the hospital for the test - but it might be an option.

Please let us know if that has already been discussed...

Perhaps someone else here has another idea.

and please keep us updated!