Please tell me how do you cope with PAIN
I think it depends on how much.
Most PPSers got used to being in pain as children, and a certain level of pain isn't even noticed. For those of us who are lucky enough that the pain stays at a low threshold, aspirin or Advil or whatever is sufficient for when the aches occasionally get a little worse (and it's often handy when trying to sleep). (I confess to having some Percocet pills for my occasional kidney stone symptoms, and I have been known to pop one every now and again for PPS aches and pains.)
But many here are not so fortunate as I am and are in considerably more pain, enough that prescription pain meds are necessary on a fairly regular basis. I have no direct knowledge of this situation (for which I am immensely grateful), but I gather that the procedure preferred by the medical community is for you to work with a "pain management specialist" to devise a pain management plan that suits your needs.
I really do feel considerable sympathy for those of you who are in serious pain. Pain can do far more to reduce your "quality of life" (and take the joy out of life) than most physical limitations. You deserve to be treated as well as medical science can manage.
Thanks for your input.
My polio came to me at age 31 in 1956, we had three small children at that time and the polio was
very mild at that time.
I have Dr. Bruno's book "The Polio Paradox" which helps a lot.
I usually take Tylenol/Arthritis 2 in the morning and 2 at night time which seems to help
I am also taking P. T. twice a week
and believe me I will keep doing that. I do feel lucky to have a doctor who will read anything that
I bring in.
You might want to ask your doc whether he thinks seeing a pain management specialist would be worthwhile. To a degree it probably depends on whether there are any good pain management specialists in your area, and likely your doc would know if there are.
But if you've made it this far doing what you're doing, I'd say keep it up!!
Joyce: Pain has been my constant companion for at least 15 years now. I have run through the whole field of doctors and medications. It was my first symptom of PPS although I didn't have a clue at the time. My pain is just like it used to feel after the first day of practice in football or like we feel after strenuous exercise using muscles not used to it, like hiking up a hill after months of inactivity. It is a soreness which lasts '24-7' but hurts most when I first get up after lying or sitting for more than 30 minuutes or so. I am not tolerant of pain and find it to be frustrating and infuriating. I am probably much more of a 'candy-xxx' than others. I suffered from migrane headaches from 1970 until 1986 and I learned about doctors and pain medicine. There are good drugs that help a lot. There are some that are 'too good' for some people. I don't use some drugs simply because I get greedy to feel better and pain free and use too many. I've been seeing a compassionate pain-management specialist for several years now who makes my life fairly normal. I would reccomend seeing a pain specialist for a couple of reasons; one, they simply know more about the pain and drugs and, two, they won't give you an endless supply of Vicodan which is really hard on your liver. Lots of great regular doctors are paranoid aboiut prescribing heavier pain medicine because the government tracks them. It doesn't take too much imagination, especially after Michael Jackson, Anna Nicole Smith, Heath Ledger, and many others who OD on prescription drugs, to understand why doctors don't use strong habit forming drugs even if that is what is called for. The best approach to this whole puzzle is to find what works for you. Obviously, it is best to deal with pain without serious chemicals. There are many success stories with diet, exercise, Yoga, acupuncture, and other remedies.
Joyce, just stay with it and don't just give into pain. It saps your mind and body and makes every thing else harder. Good Luck Frank
I'll add that it's important to deal with doctors that understand the difference between ordinary pain and fibromyalgia. Fibromyalgia occurs when some other disorder triggers it, and it is in essence a sleep disorder, where the body cannot get enough of the right kind of sleep. This in turn causes a buildup of "substance P" in the spinal cord, which turns the body's touch sensors into pain sensors, so you're "exquisitely" sensitive to touch all over your body. "Substance P" is reduced/eliminated during certain types of deep sleep.
Treating fibromyalgia with pain medications is counter-productive, since the pain meds further disrupt sleep. Furthermore, virtually all "sleeping pills" prevent the right kind of deep sleep.
I have found that a nice 'hot' tub of water, refueling as it cools, until the hot water tank is out of hot water (grins) and just soaking in it helps me the most. Unfortunately, currently I am without an accessible tub and I really miss it.
I do take 2 ibuprofen in a.m. and 3 in pm on a regular basis. When pain was really bad (like weather changes) I was taking tramadol, but I am experiencing some 'not good' reactions from it now that I did not have in the beginning. After just taking 1, it will take 3 days for me to shake it out of my system, it slides me off to a depressive side, and I notice it is hard to catch my breath too. So, I've stopped using them, and will discuss with my physician on my next visit.
When it comes to pain treatment, I think we survivors need to be extra alert to how our bodies react to medications. As Dr Bruno has pointed out, when we have anesthesia for surgery, the anesthetist should be aware of our polio background because of how it effects our body and could effect how long it takes for us to come out of it.
We really have to listen to our bodies!!
Dealing with pain is an everyday thing for me, sometimes the pain is mild to severe.When I am in pain, I lay down and rest for a while, I also take advils and b-12 supplements and use a heating pad where the pain is most severe (legs, back,). My leg muscles are what cause me the most pain, so i try to limit my activities and plan accordingly so i won't have a set back. I am barely 42 yrs old I have no idea what to expect as i get older.
Best advice I can share is to take it one day at a time. I know we all slip into 'worry mode' more often than we'd like, but I've learned that our supposed or imagined fears can be far worse than the reality. Logically, we'll all need some kind of assisted care, research the options and make a plan a, b and c. If you are fortunate, you'll have family that will be there for you.
Aging, no matter what condition one is in, is not fun!!!
Thank you Nancy, I must admit, I probably do worry more than I should.The future seems uncertain. Although right now in my life I am able to do most things in moderation, I try to keep a good balance with the help of my family. A plan a,b, & c seems to be excellent advice.
I also have pain 24/7 but like you I do rest more and am lucky to have a husband who helps a lot.
He has no idea about pain as he doesn't seem to feel pain and is not ever sick for which I am very
thankful. I can still drive my nine SUV and I do still volunteer once a week at a botanical garden
here in Encinitas, CA But my pain is also in my legs and arthritis in my right hip I think the pain
is more from arthritis than the polio. Since I am 86 years old I am not certain if I would be a very
good candidate for a hip replacement.
My doctor is good and reads all of the literature that I bring in and he does not push pill at me
which is good.
Thanks again for the info. Joyce