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Author Topic: Chronic Pain - still searching for answers  (Read 3278 times)

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Offline guitargal

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Chronic Pain - still searching for answers
« on: July 21, 2014, 01:23:22 PM »
Hey friends, sorry this is long. I was wondering, as a LTS, is it the disease or the meds all these years?  or both.

Anyone have chronic pain? What kind? What do you do for it? What have the doctors said about it? What kind of doctor or tests have helped you diagnose the cause and treatment?

poz in 1992, so i have taken everything under the sun as far as HIV meds go.
other than that i did not take any other meds until 3 years ago.. i am 53 now. this started at 49 and i was doing really well.

summer 2011 i had leg pain that was going on for a few years and my doc took me of HIV meds to see if the pain would stop. I was on Atripla and all messed up with dreams and anxiety.. off meds maybe 3 weeks,  the pain got worse and moved into my hands and arms as well. stabbing pain in my shins and arms. couldn't squeeze and dish cloth. . and instead of starting HAART again he had me try gabapentin.. yuck! couldn't take that.

 so i got a second opinion, took 2+months,  and she started me on Complera and i got worse. then my whole body would have these attacks of pain and i lay crying and she had no idea what to do.she would not prescribe pain meds.
 the fatigue was horrible. could not stand for long. even in the shower.. she suggested antidepressants.  elevil,or topomax..I asked her which one they are both different. i didn't want to take anything with out at diagnosis.. then she said i have carpal tunnel.. i was like  i can't have carpal tunnel in my WHOLE body! next doctor..he put me in a box as nuts and depressed and drug seeker.
I pursued Lyme disease. 4 tests and all negative.

.still searching for answers. had a rheumy order tests.after 2 years of this mess,  all ok.

what else or what doctor/specialist/tests should i seek. I go to Mass Gen now for my HIV/HDV care. I called and asked the nurse to relay to the doc there. I saw a neuro there. nothing wrong besides the PN. although they have not done any imaging.

I am currently treating HCV with the new wonder drugs and my VL is UD now. I have 1 month of that to go.

My primary has no answers or referrals for me. I will try to switch primary dr. he has no answers and prescribes lorazpam and oxy. is there something else i could try?  i would like to find out why?what is this. !!!?  I get these attacks where everything hurts and aches from exertion,  simple things.
The other day i mopped the small bathroom floor and my arm hurt within minutes and the pain lasted for over 24 hrs. sometimes it hurts so much i feel like i need a sling.

i have some neuropathy in my feet but it is not very bad. comes and goes..
I have very sore joints and muscles and tendons. Every day I wake and feel like i have been hit by a truck, like i fell down stairs . I feel bruised. I have stabbing sharp pain, spasms, cramps, tingling, twitches. my neck hurts and is weak i have to lay down and prop it up. I feel like i need a neck collar.
 My spine has muscle spasms. Doc said i just have to cope with it.

I am just so miserable . 3 years now. I have asked to switch meds and was told it was not that. New doctors, same "I don't know"  pain clinic in 2012 said fibromyalgia,tried cymbalta and lyrica. didn't work, made me depressed and flat out in bed. (found out later bad for kidneys) couldn't eat. doc back then gave me 30 5mg of oxy for the month and i was still in bed and not eating because of pain.

 switched meds maybe 3 times in the past 3 years..they put me on Stribuild and my kidneys function was bad before (un beknownst to me!)  and it got worse. kidney biopsy showed no hiv or HCV…nephrologist went over my records and said i had this kidney thing since 2008! wrong med for me, PC quack didn't check my kidneys before prescribing.
now i am on Epizicom and Tivicay.

 This morning I took 10 mg oxy and .05 lorazapam before i got out of bed..i was in such pain i knew that the  one 5 mg would not do anything and i get upset and take lorazapam. then i can finally move. He gives me a script for 90 pills,  5 mg,
but i take 3, 4 some days,  lately 5 a day..so then i when i almost run out i have to just take enough to not get withdrawal..and i suffer and can't do anything.
literally I can't cook, clean or eat in pain,  if i take more oxy then i can cook and eat. do errand and feel human..I go for groceries and come home too tired to prepare so i make sure i get a few frozen dinners ..I used to make everything from scratch and never eat take out and frozen..learning to live like this is hard. .

will i have to increase the oxy and just accept the fact that i will have to take that the rest of my life.  How much is too much? I hate it! I like to be clear headed but i can't be clear headed in pain either!

What if something else is wrong,something they missed?  and doing more damage and can be treated?

I stay home and take baths and i use ice packs and heat pads and go to PT once a week in the aqua therapy pool, 9 months straight now of PT. as i have bursitis on my sits bone that went undiagnosed for over a year because that doctor refused to refer me to anyone. ( it is deep in the glut where the leg meets the hip) from sitting and being in bed. When i am active it calms down. but then i have days like today where i am flat out and it gets bad again and i can't get it to go away totally.

i finally gained some weight back. i was down to 101 Dec of 2012.(after a bout in the hospital  with C. Diff that i never heard of and the doc blew me off when i called about my symptoms ) now i am 110. took all that time to gain.

the only thing i could think of is i wasn't getting enough nutrition a few years ago and i really try to get good calories in me.

they say there is nothing in my blood tests that show any thing wrong.

HIV VL UD cd4 998
HCV treating VL UD liver tests now normal. and they were just slightly elevated all these years. i had /have slight fibrosis, so that is good.

I have had no alcohol in 3 years and before that maybe 2 or 3 beers on a saturday a few times a month.

I try so hard and the docs have no answers. At least i found the team at Mass Gen last September and travel far to go there and i trust them. They don't know either.

ok now that the pain and anxiety meds started i think i will eat and take a bath and do some light stretching  out under the trees and think positive thoughts..

thanks for listening and any tips for me would b greatly appreciated.

best to you all..

Online Jeff G

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Re: Chronic Pain - still searching for answers
« Reply #1 on: July 21, 2014, 01:36:05 PM »
Your post reads like my last 25 years of medical records ... to the letter . I have Small Fiber Neuropathy and it took years of endless test and doctor visits to be diagnosed . I take Oxycontin and it helps me allot . I have been on it for a long time and I no longer feel drugged ... it takes high doses to treat this condition . You should ask to see a neurologist that is familiar with the condition and see if this is maybe the cause of your pain . I was near suicide when I got my diagnosis but am coping well now . 


« Last Edit: July 21, 2014, 01:38:26 PM by Jeff G »

Offline guitargal

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Re: Chronic Pain - still searching for answers
« Reply #2 on: July 22, 2014, 09:20:28 AM »
Good morning Jeff G , Thanks for your quick reply.
I spent some time looking up the SFN and distal sensory polyneuropathy (DSPN), and PN  and such. again... Thanks for the links.

did you ever have a skin/nerve/muscle biopsy?  my mom had myositis and they did a biopsy.

I think i read that the EMG ?testing does not show the SFN..I had the muscle testing a long time ago when i had charley horses in my legs, sore painful knees and thighs..but not a biopsy..then the pain subsided for a few years and then came back in 2011.

I also read that the meds for diabetic PN , triclic antidepressants cymbalta gabapentin etc. do not work well for HIV neuropathies and the small fiber type…
why do the docs not tell me these things? I have to try to find the info myself all the time…
The quack, (arrogant hiv specialist) a few years ago said the opposite..that oxy does not work for "your kind of pain" and when i questioned him he told me to stop looking things up on the internet!

 was so desperate when they said cymbalta would work (they didn't want to give me oxy)  and lyrica…
also when i was on cymbalta i read that in the trials it only worked for a small amount of people for 3 months! and this was not HIV people..

i tried them all no relief just crappy side effects and discontinuation syndrome..(fancy term for withdrawal)

for me the oxy is the only thing that does help with pain and quality of life..i need to find the right dose

i do not have the severe numb tingling burning toes like i did in the 1990's.
wearing shoes is ok and the sheets /blankets don't bother me. although my achiles tendons hurt off and on…especially if i do too much walking (which is not much really, days when i go do errands and get groceries)

" peripheral nerve damage related to advanced HIV disease and in association with the use of antiretroviral therapy-particularly in individuals treated with dideoxynucleosides"

 i keep thinking that my med combo needs to be changed..
i am currently on 2 nucleosides..the ABC and 3tc…
Am i correct that nucleosides tend to cause more neuropathies?

back in the 1990's same class, DDI, i had PN very bad in my feet and toes, not in my hands.

I am pretty sure i took 3tc also back then..i remember one drug, maybe  d4t  gave me shooting electrical shocks up my spine and was taken off immediately. one gave me pancreatitis and was in hospital a month. When Princess Diana died.. just before  the PI's came out and saved my life. I was told i  should stay away from that class of meds..

Now i understand that 3tc,Lamividuine is considered very safe and less side effects, but makes me wonder… i had many years where the PN went away..i could work and hike, I traveled and felt normal ..I lived.. if i recall i was on things like Truvada, viracept viramune.

I worry about taking tenofovir again as now my kidneys are off from all these meds.
I read last night they are working on a new kind of TDF that is less toxic to the kidneys!

So I want to try a med change again..Do you think they will do resistance testing before a med change this time as I have not had that done since 2011.

thanks.. i woke  in tears again and took 10 mg and it worked right away. when i take 5mg i wait for over an hour and i still am suffering and the suffering messes with your head..

like you don't want to live anymore..WTF!
I am not depressed when i am not in pain...I love life. i have a great family and my hubby bends over backwards helping me, and i don't want them to see me cry and suffer anymore.

thanks agin
best to you

Online Jeff G

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Re: Chronic Pain - still searching for answers
« Reply #3 on: July 22, 2014, 10:00:18 AM »
I had nerve study's done and they found the peripheral nerve damage but scores of doctors could not address the pain you and I have that are not in the extremity's like our chest and face ... I call it galloping pain . The small fiber neuropathies are not diagnosed with nerve conduction study's as it wont show up . They can do biopsy's but that can be hit or miss finding an affected nerve . A good neurologist can run test to rule out other conditions and look at your history and diagnose small fiber by excluding other possibility's . My doctor didn't recommend biopsy's because in my case it was text book example of the condition and other things had been thoroughly ruled out many times over .   

A small percentage of people can get relief from the meds you mentioned but sadly there are few effective treatments for the condition other than pain management . I wouldn't want to put the cart before the horse here before you have a proper diagnosis from a doctor and specifically give you advice about treatment but if it turns out this is what is causing your pain and the few non narcotic treatments haven't worked then you can see a pain management doctor and get treated with pain meds . I now have a good life and my pain is managed enough that I have my life back . I will never be pain free again and I accept that but now I can function and live again and I will take that as a blessing .

Im a bit rushed for time today and didn't get a chance to address some of the other things you are concerned about and will revisit this thread asap . I just wanted you to know if your doctors find that we have to same condition it can be treated and your life will improve . Hang in there and go see your doc and ask for a referral to a neurologist .

Offline Miss Philicia

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Re: Chronic Pain - still searching for answers
« Reply #4 on: July 22, 2014, 04:06:04 PM »
I just had my second visit with my new neurologist today. Like Jeff states my neurologist stated that in addition to polyneuropathy I most likely have some small fiber neuropathy mixed in, but he doesn't find it worthwhile to put the patient through a biopsy for it. He drew me some chart showing how there are various subsets of neuropathy under polyneuropathy, and small fiber is just one of many other options. Like Jeff's doctor he excluded other possibilities by running other tests on me two months ago.

Basically moving forward we will try various options for pain management. Right now I'm still trying to go through another channel for a ketamine-based transdermal topical cream, plus oral gabapentain, and now he has added nortriptyline which is some ancient second-generation tricyclic antidepressant that is used "off label" for pain relief. Studies have shown it works best in combination with gabapentin.

If that combination of things above are not working within two months we will try some other option. He will not put me on opiates until we've exhausted other alternatives. It's been made clear to me that the best I can hope for is a 50% reduction in my pain issues. I will never be pain-free... sucks but I will take what I can get.
"I’ve slept with enough men to know that I’m not gay"

Online Jeff G

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Re: Chronic Pain - still searching for answers
« Reply #5 on: July 22, 2014, 04:33:40 PM »
Miss P makes some excellent points, some that I need to make note of myself . I have been asking my doctors every time I see them if there are any new or treatments things I haven't tried that are non narcotic and they have never mentioned the ketamine cream ... if it works I want to try it if my insurance will cover it . The pain meds I'm on do the job but I would rather find outer ways so I can reduce the amount I'm taking as the only bad side effect I have is they make me tired most days .

Offline Miss Philicia

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Re: Chronic Pain - still searching for answers
« Reply #6 on: July 22, 2014, 07:20:24 PM »
Medicare didn't cover the ketamine cream -- denied as it's compound cream with parts non-FDA approved. My podiatrist office had me try another non-ketamine compound cream last year that they got me through a patient assistance program so I'm taking the script to my podiatrist office on Friday and see if they can get it made for me where they had the previous stuff done. Will update if I succeed or not.
"I’ve slept with enough men to know that I’m not gay"

Offline guitargal

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Re: Chronic Pain - still searching for answers
« Reply #7 on: July 28, 2014, 12:17:57 AM »
thanks for all the great info. it is so nice to have educated people to "talk" with
I think that when i am done with this HCV treatment, i will give my body time to heal/clean out those meds. then try something else..

first i want to try supplements again. and keep up with yoga type stretching and our jetted tub my hubby put in for me is a god send!

L carnitine, q10, alpha lipoic folic acid. calcium d magnesium..

the arnica creme and massage oil helps..have you tried that? Weleda brand. worked on my hamstring tonight.

then revisit the gabapentin.at 100mg. it is bad for your kidneys so ..

lets hope this will go away when i clear this damn HCV.

the gabapentin/nortrip combo i think was suggested last fall by the Boston specialists.  i think they suggest. to start on 100mg of gabapentin.low dose nortriptaline.

.but i chose to try  nortriptaline alone and i think i was afraid of the gabapentin as a doc prescribed me  that when the pain started in 2011 at 300mg 3x a day.. i was weaving and hungover feeling…sitting on the edge of the bed motionless…that was a drag..scared me..later to find out that it should be 100mg and work up from there..? now i question everything they want to try

then of course you have to try it a few months and wait and see..

 anyway i digress.

The nortriptaline helped my feet. so it may work for you.. but not the other body/joint pain, twitches, spasms, bruised feeling and tendonitis carpal tunnel feelings.
I can't take antidepressants.. probably because i don't need my seratonin re uptake inhibited
 it make me cry, and i get those feeling of hopelessness not hem..those suicidal thoughts they warn you about.. as most antidepressants do.

so yeah, the oxy was given after i tried other things.. I gave them all time..

one thing i read and a psych said helps with pain is increase of dopamine.i think welburtin does both? IDK.  would like to try ritalin, again..i think it helped. but doc won't prescribe it. 

so i am looking into foods/suppliments  that increase / heal neurologic response. i know there is an anti inflammation diet and i will look into that more.

best to you and be well.

Offline Miss Philicia

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Re: Chronic Pain - still searching for answers
« Reply #8 on: July 28, 2014, 08:56:37 AM »
I've only been on Nortriptyline for five days but so far it's like a sugar-pill in terms of pain relief, while eliminating my sex drive and giving me constant dry mouth.
"I’ve slept with enough men to know that I’m not gay"

Offline LongTimeSurvivor

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Re: Chronic Pain - still searching for answers
« Reply #9 on: August 15, 2014, 07:26:26 PM »
I will try to switch primary dr. he has no answers and prescribes lorazpam and oxy. is there something else i could try?


...find someone who is happy and STOMP their foot really HARD. It's amazing how much better you will feel.

Of course it's important. It's an email...

Offline mrtoad

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Re: Chronic Pain - still searching for answers
« Reply #10 on: August 17, 2014, 04:35:18 PM »
Xanax saves lives. Other peoples
prezista with a kick from norvir,
Truvada, Intellence. celexa,xanax.Revolving statin

Offline Nancy

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Re: Chronic Pain - still searching for answers
« Reply #11 on: October 07, 2014, 08:54:10 PM »
I've just gone thru tons of tests, different pharmas, steroid shots (that did nothing but inflame my gallbladder and pancreas).  Been told I have Neuropathy, spinal stenosis in my neck and lower back, degenerative arthritis in my hips, carpo tunnel, TMJ, etc, etc, etc, etc..

I was at the point I couldn't walk without being in extreme pain, stand for very long, couldn't hold my bladder or any other bodily function.  Lived on Vicodin, Ativan, Celexa, Gabapentin, Aleve, medicated brownies, etc, etc, etc.....

After the last steroid shots in my lower spine, I thought for sure I was going back into the hospital for yet another intestinal obstruction and/or pancreatitis.....

I found a NUCCA Chiropractor, who believes everything starts at the neck and they work down from there.  My hips no longer hurt, my lower back is 50 % better than it was, I've almost quit the Vicodin... no more steroid shots, gabapentin, bowels have improved...... 

Drug my husband to same Chiropractor, he no longer slouches from pain in his lower back, his neuropathy is to the point, he's off the gabapentin too, takes Alpha Lipoic Acid and aspirin (not without any pain, but manageable) ..

Not saying this is a cure all for all.... but I was to the point of not being able to do much besides move from bed to couch to toilet most days, ..... It's helped me !

Most insurance covers some Chiropractic and Medicare covers 12 visits a year.
Deborah Cadigan-Little
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Member since Sept 2002
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Offline guitargal

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Re: Chronic Pain - still searching for answers
« Reply #12 on: October 14, 2014, 01:19:01 PM »
thanks Nancy,
i will try the chiro again..glad to hear it helped you..

when this started 3 years ago, i did try a chiro went to about 5sessions.. i did acupuncture also..

i have just treated and cleared HCV! so i was hoping i would rid myself of the pain thing..
curing the HCV has helped me in so many ways..
i no longer have the chronic fatigue that was so bad i could barely stand in the shower. I have my energy back.

also my head is clear, thinking is much better and i have been able to gain weight i desperately needed.

yet the pain continues.

i went to 2 massage sessions recently and that helped temporarily ..if i could afford to go weekly … ugh..

perhaps i will try the chiro again.

my doc and I found a good dose/mgs for my pain management and this past month because of the pain meds and increased energy of curing the HCV i was helping around the house a lot..

i have been helped with painting the bedrooms and trim and baseboards and i packed things away and moved furniture and even scrubbed the floors that had hardly been cleaned in years..then the meds wear off and i feel like i was hit by a bus..

at least i can do things again and have the energy to do it and am not depressed anymore.

if i take it easy and do not do things i still feel like i was hit by a bus when the meds wear off.. back, hips, legs, feet,  spine neck arms…whole body..

and so it goes.. but so happy i cured the HCV.next and last test for that is November..


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