Opinions about chronic pain

[shreveman]

Hello all:

If you have read any of my other posts, you will know that I have been fighting advanced stage cancer for the last 2 and a half years and just passed the 13 year mark as being HIV positive in August. Since I first got cancer I have had varying degrees of back and torso pain - sometime it's really bad, for instance I can't sleep on my side and other times it's just a dull, constant ache that radiates throughout my upper torso area. My oncologist recently ordered a fully body bone scan to check for cancer spreading to my bones (that might be the reason for pain), however, thankfully, there is no evidence of disease in my bones. Driving long distances can really aggravate it along with doing yard work like cutting down bushes with a saw and picking up fairly heavy tree limbs and carrying or dragging them out to the street for pick-up. After doing work like this for three hours or so, my back feels like it is on fire and it even hurts when I sit down - at this point I usually take 1 to 1 and a half Lortab to get some relief and call it a day on yard work or whatever manual type labor I might have been doing. I have known other people with HIV/AIDS who complained of pain and I have read stories on the internet from people with HIV who experience chronic pain. Neither my ID doc or my oncologist seem to have any explanations as to why I continue to have this pain. I used to have a lot of low back muscle spasms when I was in my 20s and 30s but this is different. I feel like I've developed some kind of chronic pain "syndrome". I would be interested in hearing from others who experience chronic pain, what the doctors say about it and what you take for it, if anything, etc. Thanks to all who respond. Roy

[onemoretime]

hello,

I have chronic pain also,  I have had problems in my wrists since before diagnosis.   the virus actually hurt my wrists.  As far as the back goes I have terrible back pain..  I have 2 ruptured discs and bulging disks they press on the nerve and cause allot of pain.  this could be related to hiv or not.. the Dr's are not sure.   I fell off a stool 6 years ago at work and hit the ground hard on my butt.  the xray showed nothing, didn't' get an mri. they decided I bruised my coxes (tale) bone.    that heal in a few weeks and then i was OK for about a year... I started to notice more lower back pain and started pain meds and physical theripy.   I eventually got the mri and was diagnosed with hearniated discs..    they don't know if the fall caused the back injury. or just aging, or the virus caused the disks to rupture... I think the virus and the meds can cause some back issues.     I did some reading and found that most hiv'er have some form of chronic pain.   They actually consider it treattable just like cancer pain. 

I had 2 epidural injections a few months ago.  5 week apart. that has helped allot.  I still take a perkocet a few times a day on bad days. I try not to take it everyday because the addiction gets out of hand when you are physically addicted to pain meds. you need them all day everyday and you get sick as hell without it.. so i try to do a week on and week off the pain meds. so i don't get addicted.

this is a great topic.. I can't wait to see the posts..  thanks.

[antibody]

I too live in chronic pain.  I take 5mg of Methadone 3 times a day to control my pain. I do have break through pain and for that I use Medicinal Marijuana which seems to be the best help. Most days I feel great. I like to eat it to get the best pain relief and body high but I also smoke it throughout my day. It also helps with depression and insomnia and not too mention the munchies. It truly is my wonder drug without it my life would be in misery. I know it has a stigma for being a hippie drug but when it comes to my chronic pain relief chronic is first in line.

[pos2007]

I also  have cancer.  HIV pos about 7  years,  AIDS defining 2  years. Prostate cancer  and 2 differing   types  of  tumors in various parts  of  my  body.  My oncologist  prescribed me darvocet,   take  2 every 3-4  hours as needed  for   pain.  I refuse to  refill  it  any more because it is so  constipating and rely  on extra strength Tylenol  and  laying  down  for  relief. I can be  on  my feet for about 30  minutes before  the pain gets to  intense for  the  the Tylenol to control. 2  hours  on  my  feet is  miserable. I  can  Drive about 6  miles before it  gets very distracting.  My  pain  is  also  predominately  abdominal  and  perineil.  My  last scan  shows   cancer has  not spread to  my  bones  either, although  I   have also  had severe bone  pain  in my arm , foot  and  leg  but seems  to   have  subsided some a few weeks after  the prostatectomy.  I am  not  overweight.  There needs to be some type  of  non  narcotic, Non constipating pain reliever out  there that lets  us work  through a normal day.   How  many  more  of you  HIV  pos ,  non  smokers  have  had  cancers  before  you  were 50  years  old? I still  think  HIV speeds  up  the  process although  my  doctor   doesn't   think  so.

[ZCorker]

May I ask what type of cancer you have? 

Zee
 

[ANGEL42]

Hi There,
 Two Time Hiv realted Hodgkins Lymphoma survivor and Poz 13 years and since the Cancer I`ve had severe neuropathy in Legs and Pain in bones. I take Vicoden 4 times a day. Its the only way I can move sometimes.Sucks. I miss my old body before HIV. Oh well
Thaks for sharing

[hart]

I too have chronic pain, have been HIV Poz for nearly 21 years, but I don't and have not had cancer ... that I expect is the next thing, and I keep expecting to get notice that I do, but so far I've been lucky.  Best of luck to any and all of you that have it on top of HIV.  NO FUN!!!

I have pain everywhere, depending on the day.  Most of my pain is in my hips and legs.  I have chronic back problems, which add to the pain, but I've been diagnosed with "Neuropathy".  Either related to the HIV drugs I am or have taken, or the HIV itself.  I've also had carpel tunnel syndrome, which has also involved some neuropathy, so that's also involved here, though I had surgery for one hand's carpel tunnel, which has made a world of difference, after a long recovery time.

I started taking "Oromorph", an oral morphine product, which like any oral medication, lasts for a period of time, then wears off.  All narcotics give you constipation... you just need to compensate with fiber and all that stuff.  Oromorph made me drowsy, though I used it for a couple of years.  I was also taking Neurontin, which is specifically for Neuropathy, though it does not work for everyone.  I was also taking antidepressants, which can also help chronic pain.  I have always used hydro-codone/acetaminophen (Norco... it goes by a lot of names) for breakthrough pain.  After Oromorph, I used the Fentanyl patch.  That was the best for controlling pain, because it worked over a long period of time.  I would recommend it for anyone with chronic pain.  Again, it made me too drowsy.  I'm now using hydro-codone alone 2 tabs of 10 mg hydro-codone with 300 mg Tylenol each.  They just barley work to cover the pain... and in the last few weeks, I've had a lot of breakthrough pain, with the flu and severe back problems.  I've never used marijuana for pain, though it makes me go to sleep, so sometimes I've used it for sleep.  I don't live in a state where it is legal to use even for medicinal purposes.

I don't have any best practices or suggestions for you... it's individual.  "Poz2007" indicated that he won't take the narcotics because he does not want to become "addicted" to them.  I personally think that is the wrong term, though you definitely become "dependent" on them.  If I don't take a pill (forget) or something, I really get miserable... part of it is the pain, part of it is the dependence on the medication.  An if you ever have to withdraw unexpectedly (i.e. you can't plan to slowly decrease the amount you take) it can be a terrible process.  I've been through it several times.  These narcotics are also influenced by the other HIV meds you take, so you have to be aware of that.  I take Norvir which is used to boost the amount of other HIV Drugs in your blood stream, which also influences the Norco levels in the blood.  Several times, I've gone on vacation, forgotten the Norvir, and had withdrawl-like-symptoms even though I'm still taking the Norco (or what ever).  I can talk about the withdrawl symptoms if you are interested...

[TimmerInBigD]

Hi Shreveman/Roy,

I've been positive for nearly 18 years, experiencing chronic pain for 14 of those years. I started noticing pains in my feet after taking some of the earlier AIDS drugs around 1996. My doctor originally laughed at my complaints, saying I was imagining things.  He did prescribe Neurontin, which I used for about 18 months, until the benefits wore out. Previously, neuropathy in the hands or feet was mostly a side-effect of diabetes, but it took 5 or 6 years before it was linked to some of the early HIV drugs.  My primary physician started treating me for neuropathy by prescribing Oxycontin in 2001.  Before long, I was taking huge amounts of Oxy and the pain kept increasing.  After 6 months of trying to work and carry on a semblance of normal life -- and failing -- my doctor suggested that it was time to resign my job and file for disability benefits with Social Security.  The next 5 years were basically a blur until my doctor suggested that I see a Pain Management Specialist.  After 4 months, my pain doctor promised me he could get me off the highly addictive Oxycontin without any of the problems I'd experienced in 3 previous attempts.  Each time I felt like a junkie going through withdrawal.  Although I was hesitant, I followed his directions and didn't have any problems going from Oxycontin to Methadone.  At first, I took 5mg of Methadone 3 times a day, but I still had quite a bit of pain.  He then adjusted the dosage so I now take 10mg upon waking, then 5mg at noon, 10mg at 6 p.m., and 5mg at bedtime (midnight).  In addition, I was taking Effexor XR and Lyrica for depression under the directions of my psychiatrist. The pain doc contacted my psychiatrist and the Lyrica dosage was increased to help fight my neuropathy, plus Cymbalta was added to my pain cocktail.  Current dosages are 120mg of Cymbalta first thing in the morning, with 300mg of Effexor XR at noon and 300mg of Lyrica at noon, followed by 300mg of Lyrica at 6 p.m.  I guess I should note that I am 5'11" and 202 lbs., so the dosages I take might not work for other body types.

I still have times when the pain breaks through and I take Darvocet when that happens.  Three months ago, the pain specialist ran an electrical conduction test to see how my left hand and right leg handled electrical charges, which would also tell him how the neuropathy was expanding.  The results indicated my neuropathy had spread to my lower legs, but no indication that I have any neuropathy in my hands.  However, the test also indicated that I have pressure on nerves that leave my lower spine, causing sciatic pain in my lower back and my left hip.  I have suffered from this pain, on and off, for nearly 30 years. I was scheduled for an injection of lidocaine in the sacroiliac joint, which required the doctor to use a live x-ray procedure to position the needle right in the joint.  It really worked quite well, but it may need to be repeated every 4 to 6 months.

I'm able to function much better on the 30mg daily than I did on Oxycontin, which I don't miss at all.  I even feel motivated enough to try to work out on a regular basis, which I hope to begin in the next 7-10 days.  Hopefully, increased activity and dropping a few pounds and adding some muscle won't negatively impact my neuropathy.  However, If my doc wants to prescribe Medicinal Marijuana like antibody is taking, I won't object at all!

Best wishes to all of you dealing with chronic pain; I hope someone benefits from our postings.

[pos2007]

Wasn't  an addiction  for  pain  meds  I  was  concerned about.  It  was the narcotic effect trying to  drive and  operate machinery coupled  with  the  constipation.   I  was  on  hydro  codone  in  the  past.  same  problem.  I  eat  raison bran all day as  my  main diet  and  take Docusate prescription  stool softner too.  Fentanal   is good  for  pain   but a definate "sleeper".  At  least it is  one  way  to  get sleep,   just not when  you  work.   Told  my  wife I  am  changing  from Tylenal  to  Advil  tonight  and  try  that.  One  of  you mentioned   hip  pain.  I  had  that for 3 or  4  years before the PSA started climbing like a rocket and come to  find  out that and lower back pain can be one of  the signs of developing prostate cancer so please  keep a watch. Prostate  cancer  is  no fun either and  used to be most  of  us  with HIV were dead before age  40,  let alone live to  have   cancer at 50. Now  it  appears to be more  common place.  Also some  hair growth  products  cause a lower PSA result  by  nearly  half  and  some speculation   of  the  same  on  vit. D   which most of  us  HIV  pos.  men are short  on.  2 cents  worth  from being  there.  A  lot  of  doctors  have told  me  the cancer is  not a consequence  of  the  HIV,  but  a couple  of my doctors quoted studies  that  showed that we get  the "old  folks"  diseases at a MUCH   younger  age and grander scale including PC. Also,  I  could  find NO  family  history  of cancer except  my  mother who  had breast cancer. Still going to  tough   it  out as far as pain  meds  rather than  fight  constipation.  Trust  me,   after  you've  had a bunch  of  stuff  cut  out   down  there,    the  constipation pain  is  worse  than  the pain alone. Time  to  just " man up" as  they  say.

[shreveman]

Hi Zee:

You asked what type of cancer I have - I have colon cancer that spread to my liver - I have numerous tumors in my liver.