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How Does One Deal With All The PAIN???

Posted by Michael on 1/13/05 at 21:44 (167084)

Hello ALL, This is Michael I am sure most of you have read most of my messages when it comes to pain. For the ones who have not I have been dealing with horrific pain for two years and two months. Have seen many doctors and still no diagnosis my case is very complicated. To be brief my pain is in the arch with pain that never ever leaves only the intensity of the pain changes. Just turned 55 have ankle clonus have had that for at least 20 years. The muscles in my lower legs are very tight because of that I do have a hard time walking I have a sizzors walk and do trip a lot. Like I have written before I have been to many doctors many test which include mri's, emg's and tons of blood work and all test were fine. Just don't know what to do anymore but suffer. I do take OxyContin for the pain but that just takes the edge off and just for a few hours. Dealing with all this pain has really worn me down I just don't know how anyone can deal with so much pain. I keep asking myself What do I do now??? I just wish I could get some peace from this pain. I have just about given up I don't know what or who to see anymore. Just returned from another Podiatrist after running a few test and checking out my feet and legs he said there was absolutely nothing he could do for me just mentioined I had some sort of muscle nerve disease and needed to see a neurologist I already have seen three which they have all have ran many test and found nothing wrong. I am so disgusted and worn out. Can anyone here give me any advice on what to do or who to see?? Please I need help. Michael

Re: How Does One Deal With All The PAIN???

SteveG on 1/13/05 at 21:58 (167085)

Michael - what did you find out about the spinal stimulator we discussed?

Re: How Does One Deal With All The PAIN???

Julie on 1/13/05 at 22:24 (167086)

Michael, I truly hope that you will get the help that you need and discover the underlying cause of your pain and get treatment that will resolve it. Meanwhile, I urge you to talk again to your doctor about pain management, and if he or she can't or won't help, ask to be referred to a pain management specialist. No-one need live in constant, chronic pain: there are effective medications to keep it under control, and it's important to control it because, as I don't need to tell you, there is more to life than pain, and there is no way one can get on with one's life if one is dealing continually with intense pain.

I speak from my current experience. I wouldn't have thought it possible that pain at the level I was experiencing it could be managed. It took a couple of weeks for my doctor to move me up the pain med ladder, but I am now taking medication that really works. In the wide and wonderful spectrum of drugs, there must be one that would work for you. I don't know what your feelings are about taking medication, but perhaps you feel as I did before I knew what real pain is. I would not have chosen to take strong medication, but I am very thankful for it now. So do look into it. If you can get your pain under reasonable control with medication, you will be able to think about other things in your life besides your pain, and you will be better able to make good decisions aboout your long-term treatment.

Once again, I hope you will find that long-term help, and a permanent resolution of your problems. Meanwhile, pain management can help you.

Re: How Does One Deal With All The PAIN???

Michael on 1/13/05 at 22:40 (167092)

Hello Julie I have been seeing a pain med doctor now going on three months he has me on OxyContin which does take the edge off the pain a couple hours. What pain med are you taking? Please explain your pain in detail such as how long, location of pain etc. Thanks, Michael

Re: How Does One Deal With All The PAIN???

Dorothy on 1/14/05 at 00:20 (167105)

Michael -
I don't want to butt in at all, but wanted to make sure that you also saw the post from SteveG?? I recall from his previous posts that he gave you some information about this. Maybe inquiring about it with your pain management doctor would be a good idea?? In addition to Julie, and SteveG's posts, you might want to do a search on BrianG's posts; he often has good information, too, about pain management, medications, and such.
I wish you well-

Re: How Does One Deal With All The PAIN???

Julie on 1/14/05 at 04:01 (167109)

It's in my back, Michael - or was. It was intense and constant, but is now virtually quiescent. I am now taking slow-release 90mg dihydrocodeine twice a day, topping up when necessary with 30mg. Before we got to that level, I was prescribed Voltarol (diclofenac) which just took the edge off, and before that Ibuprofen, which was useless. I am probably fortunate in that my GP listens to me and has no prejudice against pain management, which so many doctors still have. (A friend of mine is waiting for a hip replacement and has been in severe pain for months: her doctor doesn't believe in anything stronger than paracetamol.)

You need more than 'taking the edge off for a couple of hours', and I'm sure it must be possible. I don't know anything about OxyContin, and very little about pain management generally - Brian G is the expert here - but I'd venture to say that if what you're being prescribed isn't working successfully for you, there is probably something that would. Perhaps you need to see your doctor again and be very specific about your pain level.

Re: How Does One Deal With All The PAIN???

Ralph on 1/14/05 at 09:39 (167127)

If I were you, I'd make an appointment at The Mayo Clinic. At least there you would be seen by all the necessary doctors in one single location and they would go over you from top to bottom. I know everything is a gamble when it comes to treatment but somehow I feel having all the best doctors
being able to see you in ONE location is worth a try.

I'd certainly type out a complete medical history for them, including securing any surgical reports and getting all physicians records and their notes. In addition, I'd gather up copies or the originals of every test I ever had like xrays, mri's, nerve conduction. Everything, not just the printed reports, but the actual films themselves.

I'd do it not only for your foot, but for every part of my body that has been tested or treated say for the last 2 to 3 years. My thinking is the more information you can provide them the better off you are.

I had a friend who suffered from severe itching and abdominal pain and no doctor here could figure out the cause. He hated to spend the money, but like you he was at the end of his rope. I know because I spent many nights with him to make certain that he was safe (if you know what I mean).

Finally, he made an appointment at Mayo and although I didn't go with him, he said his treatment there and the way you are moved along from speciality to speciality was remarkable. To make a long story short the problem turned out to be caused by the migration of material that had been put in several years earlier to repair a hernia and they found a cancer that others had missed.

He ended up having surgery there for both and started a chemo treatment there as well, but came home to finish the chemo treatment program with a referal to a physician here to continue it. He has returned once for a check up and his new doctor keeps tabs on him. Today he is fine as far as he can tell at this point. As you know with cancer, it seems several years must pass to be considered cured, but I have to say he is a different person than before.

I certainly can't promise you a cure at the Mayo Clinic, but like many others when all else failes, if it were me I'd try to go there.

I'm just a fellow P.F.suffer voicing my opinion. I hope you find some help.

Re: How Does One Deal With All The PAIN???

BrianG on 1/14/05 at 13:31 (167137)

Hi Michaeal,

I'm not positive, but I think we may have talked before. First, your wasting your time by asking other patients to explain their pain, how long, and all that stuff. Everyone perceives pain differntly, not to mention everyone's injuries are a little different. Trying to guage your pain, or meds against someone elses, is like comparing apples to oranges.

You are already on a pain med that should take away a good porton of your pain, if prescribed properly. OxyContin is probably helping more people in chronic pain / cancer pain, than any other drug out there. It's very apparent that you are not taking enough, on a consistant daily basis. If your doc is not willing to increase you, it's time to find another pain doc / clinic who will treat you properly.

At this point you still need to be titrated up slowly, an increase probably every 2 weeks until you are comfortable would probably do it. Are you taking it every 8 hours, 7 days a week? If not, your setting yourself up for the yo-yo syndrome. You'll always be chasing the pain, as you won't have enough meds in your system at all times, to keep you comfortable. Your pain will never be gone completely, pain meds just don't work like that. If taken correctly though, you will get a good part of you life back, and pain will not rule it (your life). To take them effectivly, you have to be committed to take them 3 times a day, every day, no matter how good, or bad you might feel on any given day. It's a commitment, are you ready? Is your doctor willing to do what it takes? Unless you have these two things, I don't see you getting adequate pain relief.

Sorry if I'm kind of blunt today, but we are having some really wet, chilly weather lately. It's enough to test anyone!

Good luck

PS: I hope your not afraid of 'addiction', because you will not be addicted. Addicts crave more and more of the med, daily, chasing that high. Chronic pain patients do not get that 'high', therefore we do not crave the med. It just ends up being another pill that you take during the day. If and when you are cured, your doctor will slowley wean you off the meds, with very little discomfort.

Re: How Does One Deal With All The PAIN???

Pat on 1/14/05 at 13:51 (167139)

Hi Michael,
I've read your posts and I think have responded to one that your wife wrote. I am so sorry you're dealing with this pain because I am dealing with alot myself so I know what you're going through. My main problem is PF (I had surgery on 11/3 and I know it's going to be a long haul but I'm in pain and my feet are tired and sore all the time) but through all this I had one Ortho send me to a neurologist. I also have problems with falling and just the way I walk you can tell something is wrong. I also went through the blood tests, 4 MRI's, nerve conduction etc. My neurologist is excellent and seems to know what is wrong but it's hereditary (there's so many different degrees to it but I know people on my mother's side of the family have similar problems) and he said that it has to do with inside my spinal cord and short circuiting. He said that I fall because my muscles are stiff etc. Anyway, the blood test for this (since it's genetic testing) is $5,000 (yes, you read that right) and it's not covered by insurance. I told him that there was no way that test was going to happen and since there isn't a cure for what I have he's going to start me on the drugs that he would give if it was a positive diagnosis (anti-spasticity drugs). This guy is really excellent and is willing to work with me to see if he can help. I know you've been through the mill but maybe you can get some referrals to someone that you know will try to do something and not push you off like it's no big deal. It sounds like something with the muscle/nerves etc. and alot of tests don't pick up what it is but they should be able to try and treat the symptoms while they're trying to find out what the heck it is.

Re: Brian We Have Written Before, Thanks

Michael on 1/14/05 at 18:33 (167185)

Hello Brian we have written to each other before. I am on the OxyContin and I am taking the med three times a day probably every six to eight hours. I am taking the 20 mg pill three times a day. Like I wrote I have no diagnosis I have been to plenty of doctors have had may types of test ran plus tons of blood work everything in the normal range. I do have ankle clonus and tight muscles in the legs for that I take Bachlofen. Be as blunt as you want all the info will be appreciated. Thank, Michael

Re: Tight leg muscles

Linda V on 1/15/05 at 07:11 (167235)

Tight muscles in your legs can be helped by seeing a really good massage therapist. I am not talking about a nice, relaxing spa massage. I went to a person that gave what was called a medical massage. I was impressed with all her knowledge of anatomy and physiology. She was well educated, and still going to classes for more. Anyway, she worked on my legs the first few visits before she would even touch my feet. She 'stripped' the leg muscles, and dug into pressure points until my muscles let go. It was NOT fun...but I was amazed at the amount of flexibility I regained within a month. Of course, I also had 'homework' to do in between visits.
I also, again, recommend you read Dr. Sarnos book. Don't smirk and brush it off as thinking I am wondering if it is all in your head. This book deals with PHYSICAL things that happen to the body as a result of what the brain perceives. What do you have to lose by reading?