This page contains some posts on pain management.
Subject: [PPM] pain
From: Laurence
I had polio when I was 3. I am 63 now and have experienced chronic pain for the last 5 years.
I am currently seeing a physiatrist and a pain specialist. My daily
medication includes tramadol, oxycodone, Neurontin, and ibuprofen. I feel like pain management is a second job, and a job that I am not very good at. The relief that I am getting is wildly inconsistent.
I would appreciate hearing from folks who are also dealing with chronic
pain and hear how you are dealing with it.
// Laurence
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Subject: Re: [PPM] pain
From: Dick
Those strike me as mighty strong meds. Can you say what proporton of the pain set might be from arthritis - i.e is it worse on arising or does it grow stronger during the day? How might your pain relate to overuse of one or another muscle or set of muscles?
I had polio in 1944 at the age of 8 and get some relief from aspirin but not ibuprofen or tylenol. Most of my pain is from arthritis and overuse after all the years.
Dick
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Subject: Re: [PPM] pain
From: Ken
Hi Laurence,
I've been going through chronic pain since 30 and I'm 64. Just got help at 50 with Oxycontin and Oxycodone. I'm taking physio and find myself constantly trying to keep changing my patterns around and trying to keep fit. Keeping exercise seems to help. I had polio at 14 months in the polio epidemic. I've always been a paraplegic with severe paralysis in my trunk and legs. I went into a wheelchair with post polio when the pain struck.
I'll keep in touch when I can,
Cheers,
Ken
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Subject: Re: [PPM] pain
From: Loreen
My husband had unrelenting, debilitating pain from an accident. He recommends you look for a pain clinic in your area. He was hit by a car while riding his bicycle. Broke multiple bones, had crush injuries, head injury, PTSD too. A friend told us about pain clinics. Our hospital ran it. It was multidisciplinary, included a whole range of professionals. Included PT, OT, social worker, physiatrist, psychologist, diet, tai chi, a range of meds and things like acupuncture and a TENs unit. They started out giving everybody everything, then went through a process of elimination to find what worked best. It required a huge amount of effort on both our parts, but it worked. He got completely off the opiates, which was one of his goals. He still has pain, sometimes more than others, but it's nothing like it was. This program made a huge difference in both our lives.
Loreen
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Subject: Re: [PPM] pain
From: Alice
I'm sorry you are having so much pain, and wonder if it may be telling
you that you need braces to help support your muscles. I now wear a
back corset-like brace and a full leg brace on my most affected leg. If
I leave these off more than about 2 hours during the day I have pain and sometimes feel so tired I am nauseated, but with them I seldom have any pain at all.
Alice
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Subject: Re: [PPM] pain
From: Ron
I have read your statement . It looks like a carbon copy of my own experience . I was 8 yrs old when I had polio . That was back in 1942 I'm now 80 . My pain started at aronud 65 yrs old and has gotten worse every year until I reached age 75 when it seems it has gotten as bad as it is going to get . At this time there is very little that I can do . I cannot walk without a walker , it takes me forever to get down on my knees and then I can't move because of the pain. I have taken at one time or another all the same things you have mentioned and I might add that none of them have done anything except cloud my mind and make me a damn vegetable. I had gone to pain management clinics and therapists and tried about anything available . Then I realized that there is only one person that is going to get me through this situation . That was me , once you get it into your head that all the pain medication and therapy in the world isn't going to make you stronger
or better you can start to improve your condition .
You have got to program your mind to live with the pain . You need to establish your threshold and then expand it everyday until you get to where you think you can live with it. I might add that I have never reached the point of being through with it . I try everyday to expand my threshold . I exercise and stretch everyday . At this time I don't take any pills but I do wear a pain patch . I maintain my weight by eating only natural food (nothing processed ) no sugar or salt . and lots of water .
Do I still have pain , Yes I still have pain but I live with it I know what I can do and what I can't do . I know that sometimes it will take me all day to do something that used to take a couple of minutes . I don't know that I have answered your question but at least you know that your not alone there are lots of peop;e in the same situation.
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Subject: Re: [PPM] pain
From: Scout
------------- Forwarded post ----
From:
"Chuck"
I had polio in 1947 and over the last few years have a fair amount of pain. However my wife has MS and a broken back, and has a lot more pain than I do. She goes to a pain clinic in Glendale, Arizona,(Arizona Pain Specialists) that provides quite a bit of help for her pain via a procedure called Pain Ablation, where they block the nerves from sending the signal to the brain. I am including an URL about ablation, but what my wife gets are strategically placed shots which work for about six months. And provide her were a fair degree of relief. The shots are called radio frequency wave, the important part is to find the area to make the injections, they will give a test block shot first to see if they are in the right location then after one or two weeks they check with the patient to see if it provided relief, if so then they apply the shots which will work up to two years.
http://www.webmd.com/cancer/tc/radiofrequency-lesioning-for-chronic-pain-
This is the web site for Arizona Pain Specialists
http://pain-docs.com/pain-procedures/radiofrequency-ablation/
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Subject: Re: [PPM] pain
From: Scout
---------------- Forwarded post -------------------
From:
Alice
I wake up in the night with pain. I take a Vicodin if I need to in order to get back to sleep. In the morning I take a Vicodin and lie in bed for an hour until the pain subsides.
I am limited to 4 Vicodin a day. I save one for bedtime. That leaves me 2 during the day (unless I used one of those in the middle of the night).
I stay active most of the day until the pain gets too bad. I'm learning every day about pacing myself and paying attention to my body. I attended an 11 week pain workshop that was extremely useful.
There are many things I want to do each day. Pain and/or fatigue hold me back. If I had unlimited Vicodin, I'd probably keep on going until I collapsed in fatigue. That's just a fantasy though. I'm strict with my medicine and force myself to rest and do much much less than I'd like.
I had polio at age 15 in 1958. I'm 71 now.
That's my 2 cents worth. It helps me to read how others have to deal with pain.
Alice
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Subject: [PPM] Pain Management
From: Anne
I am 63 and contracted polio at six months in 1952 and have paralysis in my right leg. Dealing with pain has been life-long and the result of orthopedic surgeries, overuse injuries, and arthritis. NSAIDs burned out my GI tract, so I don't take them orally any longer. The opiates whack me out as does medical marijuana so I don't use them either. When I have pain so severe that I can't think or think about anything else, I use Voltaren gel that is applied topically. I have never been completely pain free, but find that taking fish oil, collagen II, and a liquid glucosamine, MSM, and hyaluronic acid blend makes a difference in my pain level and helps with overuse and arthritis. Physical therapy, keeping my weight down, compression stockings, stress reduction and good sleep habits, maintaining KAFO, and using crutches are also part of keeping moving and staying functional. I'm trying the old home remedy of 10 gin soaked golden raisins daily as well--it
tastes good if nothing else!
Wish there were some easy answer to the post-polio pain problem.
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Subject: [PPM] pain management
From: Linda
The pain I encounter is mainly in my neck. I use a power chair, have no
working muscles in my legs, and at this point very little use of my
upper arms. I use an astaxanthin product called BioAstin ( 12mg ). I
tried it for the first time last year and although I had been using
600-800 mg of ibuprofen, I have rarely used it again since.
Look up the benefits; the only time I feel that neck pain is when I miss taking it for 2 days in a row.
I take at night an have been truly amazed. There are different brands but based on a well documented report I had initially read by an impartial nutritionist, I started with this brand and stayed with it
Linda polio, age 1, 1949
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Subject: [PPM] pain
From: Laurence
I appreciate all of the responses to my message. It is interesting to hear the range of experiences folks have had.
There are some details that I should add about my situation. I have had
episodes of pain off and on since I turned 40, but these episodes always
resolved after a couple of months. I have worn braces all of my life. In my 20s, I was down to a single KAFO and a cane, but for the past 20 years, I have been wearing 2 KAOFs and using crutches.
What is different now is that the pain does not go away. I have acute pain in my shoulders, which started at the beginning of last year. My pain is worst in the morning. When I wake up, I feel like Tin Man in the Wizard of Oz who needs to get oiled up in order to get moving. In March of last year, I started using a chair at work and whenever I needed to be on my feet for more than 20 minutes. This has made a difference in my energy, but so far it has not done much for my pain. My physiatrist sent me to several rounds of PT, and has been giving me trigger point injections, but the only thing that has made any real difference in my pain is medication.
The thing of it is this: I have been trying to do the best I could with what I had, but after walking on my arms for 60 years, my body is no longer really able to keep up. My strategy now is to conserve my physical energy and do what I need to do to get things done. I do what you can, and this seems to be what everyone else is doing.
Thanks again for your comments. It helps to know how others are dealing with pain.
// Laurence
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Subject: Re: [PPM] pain
From: Loreen
Lawrence -
On shoulder pain. Have you had any imaging done on your shoulders? One big drawback to seeing a physiatrist is that I have learned they do not have imaging in their repertoire. I went 14 years on a very painful hip, seeing a physiatrist. When I couldn't stand it anymore I made enough noise that I was referred to an orthopedist. First thing the orthopedist did was x-ray. By that point the hip was completely gone including the ball and part of the top of my femur. Had somebody actually looked when I first had that pain, life would have gone considerably better.
More recently I was referred to an orthopedist for pain in my shoulders. He sent me for MRI on my shoulders. Found both shoulders had full thickness rotator cuff tears. My primary and the orthopedist both said if there were tears I could absolutely not have surgery as I would not be able to do the rehab and would end up more disabled than I already am. The radiology people always recommend surgery for those tears, so they were flummoxed. They got the orthopedist on a conference call while I was there. He walked them through cortisone shots via this call. Worked well for me until they wore off, which they do.
First thing you absolutely need to do is to stop walking.Not just once in a while but everywhere. As long as you punish your shoulders with all that weight bearing, you will have pain.
Loreen
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Subject: [PPM] Pain Management - medical cannabis
From: Scout
-------- Forwarded Message --------
From: "Kathryn"
<<SNIP EXCESSIVE QUOTES>>
I'm sorry for your pain and for the problems with your GI tract. Just a
thought or two re medical cannabis:
Results from cannabis depend a lot on what strain you take. Colorado has been a leader in developing strains for medical use that address specific issues. One interesting new strain was developed in NM that has very low THC and produces no "high." It is strictly used for pain. It can be taken several ways, including heated in a "good" oil, such as 1st cold pressed extra virgin organic olive oil, then mixed in food.
MDs who specialize in Pain Management, in states where medical cannabis is allowed, will often prescribe medical cannabis to people who have tried traditional prescription meds and need to find something else to ease their suffering. Perhaps your experience with medical cannabis was, at least in part, due to taking a strong indica plant and you may benefit from an indica/sativa blend, or purely sativa, or the new plants that do not cause a high or sleepiness. Just a thought.
I live in a state that allows medical cannabis and have several friends
(peripheral neuropathy, MS, cancer, etc.) who participate in the program. They have been mildly to greatly helped; much depends on finding the right strain of cannabis.
Kath (polio class of 1952 also)
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Subject: [PPM] Pain
From: Steve
I got Polio in 1955 at the age of 9 months. Right leg, total paralysis. I lived mostly a normal life up until around age 50 when I began to have awful pain in my left(good) leg. In less than 15 months, I was in a wheelchair. I have used marijuana all my adult life, way before it became legal for medical purposes. It helps with my pain, as well as depression. As a poster before me alluded to, there are strains that contain higher levels of CBD's (Cannabidiol) than THC and are excellent sources for pain management. There are NO prescriptions in any states, rather Recommendations from Doctors that medical marijuana may be used for pain management.
Regards,
Steve
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Subject: [PPM] Pain Treatment Alternatives
From: Anne
The information on medical cannabis provided by Kath and Steve was very interesting and informative. I live in Seattle and marijuana use is legal here as well as in Colorado. My experience was disappointing using an edible product, particularly because it came highly recommended by a friend who was treating her pain from a failed back surgery successfully with it. Personally, it disturbed my sleep and left me exhausted the day after using it, while not providing pain relief--all leaving me wondering if that had something to do with having had polio/paralysis. I had the same experience with the drug Tramadol. My friend also uses the "non-high" form of medical marijuana, but from my observation she appears impaired when she is using it. She is accident prone which also makes me leery of using it for pain relief because I need to focus to prevent injury. So, It's good to know that other post-polios have used it successfully for pain. I'll have reconsider it's use.
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Subject: Re: [PPM] Pain Treatment Alternatives
From: Debbie
There are different strains of cannabis, Indica and Sativa strains. Indica is best for pain relief and body stones, Sativas are more for mind stones. If you Google BC Bud Depot, and look under strains it will give you all the properties of each one, which is best for your situation.
You can make cookies, brownies, and a mist. There are all sorts of recipes on Vancouver Island Compassion Club's website.
I make a balm out of cannabis, it works to ease my pain, but doesn't totally take pain away.
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Subject: [PPM] Pain Treatment and other Applications
From: Kathryn
Medical cannabis is being used for many conditions in addition to
chronic pain. The US government holds patents (patent #6630507 for
example) on the methods of using CBD, cannabinoids - the ingredient in
cannabis that does not get you high. Several years ago, when I first
became interested in medical cannabis, I requested a copy of the US
patents from someone in Colorado who had been instrumental in bringing
medical cannabis to the state. It was fascinating to read the research
that our gov't had done using cannabis in many areas: cancer, treatment of neurodegenerative diseases such as ALS, Alzheimer's, Parkinson's, MS, etc.
Research has shown that while cannabis is actually contraindicated for
young people, it can be very helpful for older people. It is not only
anti-inflammatory and an antioxidant, it is a neuroprotectant.
Eighteen months ago I spent a couple hours sitting and talking with the
newly retired head of the NIH library. She and her husband live very
close to the US test gardens for cannabis. When I asked her why the
government, which knows the medical benefits of cannabis, still
classifies it as a Schedule 1 substance along with heroin, LSD, etc.,
she told me that it was simply politics and she doubted that many
politicians had read the research. Well, as someone who has lived with
postpolio for 23 years, I remain angry that politicians in some states
are preventing many people who would truly benefit from medical cannabis from having access to it. Instead, doctors are keeping patients on a boatload of drugs that often have major side effects over time. At least the drug companies are happy.
Kath
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Subject: [PPM] Medicinal Marijuana
From: Steve
I enjoyed an interesting post by Kath on this subject. Living in a medical Marijuana state (Ca.)
I am allowed to grow 6 plants in my county. Not only are there health benefits from tending a garden of veggies and medical marijuana, you can control how your medicine is grown. I am about 98% organic, using only high quality soil and nutrients. Growing both Indica and Sativa strains.
'Canna butter' is easily made if you prefer edibles over smoking the medicine. I've seen first hand the benefits of medical marijuana with ALS patients as well as those going through Chemotherapy. As a Polio survivor from 1955 at nine months until now, I've used marijuana throughout my adult life. I worked at a highly successful career in the IT world for 30 years. I mention that so as not to appear as a 'stoner' looking for a good excuse to get high. I wish you all well.
Steve
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Subject: [PPM] Medicinal Marijuana & organic foods
From: Kathryn
Steve, congrats on your enthusiasm for going organic. Food & drink can make a difference in our overall health, as you know. My diet is almost totally organic and very close to a paleo way of eating: meat, vegetables, whole fruit, nuts, seeds, berries.
I made a list of anti-inflammatory foods that is helpful for keeping my pain level down; it is a good complement to medical cannabis. If anyone wants to see my anti-inflammatory list, I'll post it. For some people, keeping our pain level down is a full court press.
Kath
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Subject: [PPM] Anti-Inflammatory Foods
From: Kathryn
Linda, here are some of my favorite anti-inflammatory foods (not meant
to be a complete list). I eat few grains but lots of good fats, all organic when possible. Feel free to add to the list.
Kath
Avocados
Berries
Black cherries and tart cherries
Bromelain capsules and pineapple
Capsaicin in chili peppers, yellow and red bell peppers
Chamomile
Coconut oil - extra virgin
Echinacea tincture
Fish, freshly caught cold water fatty fish (not farmed)
Flax seed (freshly ground)
Garlic and onions, preferably yellow onions
Ginger - ginger tea, fresh ginger root
Green tea
Greens - dark, leafy
Honey - raw or lightly heated local honey (not for babies/young =
children)
Melatonin - low dose (not during a full moon)
Olive oil - extra virgin
Oregano
Pumpkin
Rosemary
Turmeric
Walnuts (kept in the refrigerator or freezer)
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