Chronic Pain

[robertofdc]

The symptoms started in 1998. I got a slight burning sensation in my feet. I thought it was some kind of fungus. I tried everything for fungus and other infections, but nothing happened. The burning sensation in my feet came and went for a couple of years. I also started feeling pain in my legs, especially when I walked or I was standing for longer than normal periods. This pain has been increasing through the years. I started noticing pain in my feet as well as in my legs. About three years ago I started feeling burning sensations in my legs. At the beginning they were mild and in the lower part of my legs. Gradually the burning sensation became mostly localized in the back part of my lower leg. The sensation is more intense in the left leg than it is in the right. For about two years, the pain has been unbearable. My legs burn and are in serious pain. I feel like somebody beet my feet and my legs up with a baseball bat and then set them on fire. The burning sensation never goes away, but I noticed that is even worse during the summer.

To make matters worse I have been suffering from restless leg for over one year now. It gets VERY annoying. I have also become very sensitive to touch. It is hard to explain but specially at night just the thought of touching my legs makes me uncomfortable. All this sensations have interfered with my sleep, and sometimes I go days without sleeping. I have seen many specialists, neurologists, psychiatrists, etc. They have run several tests such as nerve conduction, x-rays, MRIs, Blood, Urine, and everything always comes back ¨normal.¨ Since I don’t have any visible symptoms, my neurologist thinks it might be a peripheral neuropathy and that I have to live with it. Throughout the years the doctors have prescribed me different medicines. I currently take 0.5 mg of Klonopin, 10 mg of Paxil, and 0.5 mg of Requip. They have tried increasing the doses, but there has been not improvement and the side effects have been horrible.

This condition / conditions are ruining my life. I am only 40 years old. I have four kids (2 on my own and 2 step kids) I have a wonderful, beautiful wife that I love with all my heart. I used to be full of life and really enjoyed it as a whole. Every day is harder. My mood has changed and it is affecting my job and family. I feel I am getting worse. I am afraid that the burning sensation is taking other parts of my body. Sometimes I feel it in my hands and arms. I don’t see a solution to these problems. I would be more than happy knowing that the pain will not get worse. I don’t see a future with this suffering. I need HELP!! If somebody has an idea of what I have, I will fully appreciate your comments / suggestions.

[Kathryn in MN]

It sounds to me like you may be suffering from CRPS - Chronic Regional Pain Syndrome (another term is RSD - Reflex Sympathetic Dystrophy.

[Sue Val]

Hello. I just read your story and feel for you. I too suffer from the same thing. I am female 50 going on 80. This thing I have (neuropathic chronic pain) is taking over my life. I can't function a as well as I use to so I have had to leave my job. I worked in a hospital which was quite a lot of physical and mental work. They tried to give me less work but that only worked for a short time. I have been suffering from this now for 5 years. Nobody has really made a proper diagnosis. I have a neurologist who just says *there is nothing you can do for this* so I've tried all kinds of medications and nothing worked except for oxycoden and tylenol 3 which are narcotics but at this point I don't care I just want the pain to go away. But it just seems like even that now is not enough. I am on a 2 a day dose but this is not enough. I have told her this but she is convinced I may become addicted. Well I'm sure this will happen but what else to do. I can not live like this anymore. If this was cancer I would have no problem getting therapy or medications but because nobody knows about this disease we are left to suffer like animals. I would like these doctors to walk a day in my shoes and feel what I go through everyday. It is not known what has caused this. I have been at pain management clinic but this again was not helpful as they were clueless on what to do with me. I am just writing to you to let you know you're not alone and not give up. Keep going to doctors and do research. This is what I am doing to try to find someone who will help. I'm hoping some day someone or something will show up on the web and rescue me.
Hopeful in Canada
Sue

[pamlamay]

I was hoping someone had some ideas of what to do about this burning pain. I was diagnosed with fibromyalgia, but also wonder if it could be RDS. While I have had joint pain most of my life (primarily in my wrists and fingers), since I was a pedestrian in a pedestrian/auto accident in 2003, things have gotten considerably worse. Pain is constant but can be very manageable for sometimes a few weeks or even a month. About a year ago I started getting a very bad burning and tingling sensation in my fingers and sometimes the palms of my hands. All of a sudden durring the last month, the burning has been every day and affects most of my body. It is considerably worse at night. Right now, it is all I can do to keep from crying. Actually I am not being very successful. I started taking Lyrica two weeks ago and haven't noticed any difference yet. Vicodin doesn't do anything. My Rheumatologist told me that narcotics won't help with burning pain, but hopefully the Lyrica will and it could take 3 weeks before we know. Is there anything I can do?

[Sue Val]

Hi..I'm sorry to hear about your pain. I too have RDS. This disease has taken over my life. I have tried lyrica and many more other kinds and the only thing that seems to work ARE narcotics. I take 2 oxycoden a day. This is what my neurologist has prescribed. It helps somewhat but but by the time these have worn out I should be taking 2 more but of course my doctor won't allow it. This is very addictive. I knew that but when you're in pain things like that don't matter. I'm not saying these other drugs won't work for you but they didn't work for me. I was having very bad side effects. When I would call her to tell her about these side effects she would tell me to give it time. Eventually I could not take it no more and went on oxycoden. I was like you. I was crying all the time because of the pain. It just seems like nobody wants to believe how much pain you're in. There is certainly no support out there for this kind of disease and this is sad cause we are left to live in pain day in and day out. I just wanted you to know you're not alone and to wish you luck with this. I am doing research on the internet in hopes to find somebody to help. I live in Canada and doctors here are very rare and uneducated about this. But I am hoping to find one someday. Take care and keep in touch if you want.
A friend in pain also.

[pamlamay]

Sue,
Thank you for your response. Just being able to talk about it helps. I have to see a neurologist for the first time hopefully in the next couple of weeks. So far I have only seen a Rheumatologist. He originally diagnosed me with Fibromyalgia. I noticed from looking at articles on the Internet that RDS and Fibromyalgia tend to have the same symptoms. I guess it doesn't matter which one I have. I wanted to go to the hospital last night, but didn't think they could do anything. I am starting to think the Lyrica isn't going to work either. I have a lot of personal stress going on in my life and I don't know if that is causing the increase in the burning skin and depression. I am going to keep trying to stay on top of this. Let me know if you find something, and I will do the same. I live in Colorado.

[Sue Val]

Hi...it's me again. I just wanted to let you know that I did not intend for you to stop taking the lyrica. Please keep on taking it. It may work on you. I just could not stand the side effects of this drug. There was also gabapentin 300mg and carbamazepine 100mg that I was on and they did nothing for me. My neurologist said these worked well on her other patients with this same problem. You could ask your doctor to try you on these. They are very expensive though if you don't have a plan. The oxycoden works best for me but as I said I would need my dose raised a bit more then I would maybe be more comfortable. I feel like you though. I just don't see a light at the end of this tunnel but we must stand strong and keep searching. As I said I search the net for some kind of help. I have had some responses from people but I would like to get responses from doctors. It's like doctors don't want to be bothered with this as they know nothing about it. I have a family (husband and 3 girls) and must find a way to get back to a fairly normal life. I use to be the life of the party and was always the one people would come running to for help or just advice. Now they tend to stay away because they feel my pain. Not everybody though understands this kind of pain and that hurts a lot. I too was under a lot of stress when all this pain appeared so I wonder if this did not trigger anything. I also had a lot of dental work done in the past 5 or 7 years and my neurologist says this may be related but can't be sure. My story with this is very long and complicated but in short this could have all been because of a dentist's negligence. How ironic. Anyway don't feel alone you know you have other people like this. I will be here to listen to anything if that's the least I can do. You can write to me anytime. I too feel better just talking about it. So keep in touch and will certainly let you know if I come up with something.
A concerned friend
Sue

[MWooley]

I have something like the above posters. I have RSD. A chronic pain and burning feeling. I have been out of work from the Military for over 3 months now.

After 8 years of serving my country its almost over. My bills have gotten behind and i have got to the point that sleep is the last thing i worry about. I stay awake all night worrying about what tomorrow will bring.

I have seen 7 Doctors now and only after going to my congressman will the navy finally pay for me to see a specialist in Boston medical for my disease.

The pain at times is all i can think about. I have a baby on the way and i fear that i will not be able to be the Daddy i want to be to him/her.

The pain with the depression is almost too overwhelming. Im lost and only the narcotics help to push back some of the pain.

Seeing your posts as bad as it is to hear let's me know im not the only one out there that feels this way.

I hope we can all find the answer sooner than later.

MWooley

[Sue Val]

Hi...I sure feel sorry for you. I know what you're going through. I too suffer from disease and sleep deprevation. I have been to doctor after doctor and have become frustrated with all of them. They are all convinced that this disease does not appear to be as painful as we potray it to be. This last doctor I have seen has put me on oxycoden after every other failing medication which took almost a year for her to figure out none of the medications she was prescribing was not working and were only making me worse. But the amount she gives me a day is not enough. I take 2 a day. This is not enough in the very least. I have to bear this pain and nobody understands how painful and sick I become at times. I just wanted you to know you were not alone in this and if you ever want to vent you know somebody is here. It's important to try to stay sane in this. Take care and hang in there.
Sue

[robertofdc]

Thanks Sue,

I almost lost confidence that anybody read my story. I am absolutely with you. It is so frustrating not to find a doctor that really cares and understands what we go through. Please let me know if you find out anything. I will do the same on my side.

Regards,