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destin2beme posted:
Just today I decided to turn to the internet for answers, help, support.something. During my pregnancies I came online and joined a message board- and loved it. I never thought about doing it for this journey, until now.
It will be three years in June since I made my first trip to my doctor for pain. It started in my left shoulder. The doctor put his ear to my shoulder and told me to move it. He said he heard sounds associated with arthritis and gave me a rx for tramadol 50 mg. I remember having pain in this shoulder off and on since I was a teenager. For a little while the tramadol seemed to work and I went on with my life. When my rx ran out- I would try to see if I can go without it, but always I had to give in and return back for another refill. A year later the tramadol was no longer working so I asked my doctor for something else. He included a rx for Lodine. Another year goes by and my pain was no longer just in my arm. Last year I would say the pain was tolerable for the most part- this year it is not. My main frustration is knowing that when I go to my doctor tomorrow, I fear he will not listen. I am a diabetic and for the most part- he will focus on that and nothing else. a few weeks ago I walked into the clinic because my tramadol refill had not been answered when my pharmacy faxed a refill request to his office a week ago. The office was packed and by no means did I feel as if I was more important than the other patients.. but I did want to know why it had not been filled. When the ma saw that it was for pain- she said I would have to be seen. I admit- I was upset. I was seen just a month prior, my doctor had told me that I can just request refills- now I am being told I need to see the doctor. When I was told there was a two hour wait I asked her to just ask him. I knew there was a good chance he would not know me by name- I was right. She said again I had to be seen. As I was signing in- the doctor came out- he recognized me then and asked what the problem was. I told him. His answer to me- as he wrote the prescription was that this was not a life threatening need- that I could have tried to wait for a slower day or for him to get to the refill. I felt disheartened as I walked away- yet happy to have my rx in my hand. It may NOT be life threatening.. but it IS life altering and I thought he had been listening to me all these years. As a former Medical Assistant, I know how hard it is to screen patients who are truly in pain, to those who are just seeking pain medications. I am on non-narcotic pain medications- and most days they are not working, but I do not even try to get something stronger for this reason. My pain is mostly in my hips. But I also feel it in all my joints. My elbows, my fingers. I am in constant pain all the time lately. I quit my job at the end of last year. If I put in a full day of work- all i could do is come home and sleep until it was time to go back to work. I was in so much pain- and so tired. I was miserable. Yelling at my kids..If I have a good day- I will use it to shop, get things done. Usually the next day I have to spend it in bed. I try all the time to walk and move around- having read that people with arthritis (if that is what I have) find success with pain by moving. The last few weeks my pain has increased. I can't sleep, I cant stay in certain positions too long. I went on a anti-depressant several months ago, and it was working- but I am finding myself deppresed again. I have four kids- taking care of the younger two is getting harder. I am having to depend on my teenagers too much. I need to get my doctor to do something- but I don't know what. Anyones advice or critique would be appreciated.
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finn2 responded:
I wish I had answers for you. The reason I feel compelled to reply is that your symptoms of pain sound so much like mine. I've never posted here before, but I joined hoping to find someone with similar symptoms and maybe I'd learn something about what's going on with me. So far, I have learned a lot about pain meds but no one has seemed to have what I have. So I've kept quiet, I could write a book but I'll try to put it in a nutshell, how I feel and what they're doing for me. I'm older than you, just turned 64. I've had undiagnosed neck pain since my late 30's, they couldn't find out why with numerous tests, so I just lived with it. No other pain, I was active and worked on my feet, kept busy but in my late 40's I did put on some weight I never had before, up to 170~180 pounds. When I was 52 other pains started, first in my legs and feet and it's spread year by year until it's all over my body, hurts one place more than others one month or two or just a day or two, then changes places, the one that was worst goes away for awhile and another place hurts worse, meanwhile all over everything hurts, just not as bad as the worse places. I've had tons of tests, got way in debt even though we have insurance, it doesn't cover all until certain amount is reached so we're on a budget plan to pay the larger bills and pay anything less than $100 all at once. At this point I don't want any more tests, nothing ever shows up, I'm in debt over my head with medical bills and I'm thinking now, if something would miraculously show up, could they even fix it? And if they can't, why spend any more money to find out what it is? A year and a half ago, they found one thing. I have cervical spine stenosis (spinal cord being pinched in my neck) and that may require surgery someday, right now I see a specialist every 6 months to monitor that, he said I'll know when it's time for surgery, right now I'm not ready for that. My primary sent me to a good pain management place about 2 years ago and I'm on narcotic pain medication which gives my life back. I still have pain, some days much worse than others, but the pain is lessened enough that I can function, bend over, walk, go up steps, do some gardening, grocery shop, hold a book better, it's helped so much, without pain meds I just sit and even that hurts, I'm miserable. I can't sleep because of pain, same as you, being in one position hurts so bad it wakes me up, getting up after sleep is the worse part of my day, I could cry sometimes until I take my pills and wait an hour. I feel young in my head, but my body has turned on me. There's so many things I want to do and can't. My fingers hurt, elbows, hip, knees, NECK, back and it isn't all joint pain, it feels like muscles and nerve pain too. The muscles in my arms and legs ache, I get sharp tingly pain just out of nowhere in any place in body, like a zap, I feel things that aren't there, like someone is touching me somewhere and noone is there. I think my cat has touched my ankle with her nose but she isn't there. It isn't fibromyalgia, I don't have fatigue at all, actually I sleep little, and dread it as waking up is so terrible. I've tried some of the fibro drugs, they were bad for me, all different reasons, grouchiness in one, lethargy in another, one Cymbalta almost drove me crazy, I thought my eyes should burn holes in the wall, I didn't sleep for 2 days. Just now I had a sharp pain in my thigh, made me jump and rub my leg, now it's gone and my knees are acting up again the last 2 weeks, they've been fine for months. It comes and goes and is always everywhere. My neck doc says as long as the pain meds are working, I can choose to live that way, he isn't pushing to do my neck. I see him again next week, the pain doc once a month, this week. The pain doc has given my life back to me, sure beats sitting in pain wanting to cry, that depresses me and I dont feel I have depression at all. I want to LIVE! Does any of this sound like you?
 
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jojoinbc replied to finn2's response:
I think you may have fibro as I do. Fatigue does not always present as a symptom. The support group I belong to is mostly kept going by those who do not have fatique !! After 2 car accidents causing whiplash some of my symptoms are not fibro. So consider that you may have fibro along with other issues.

Soft hugs.
 
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finn2 replied to jojoinbc's response:
I don't know, maybe so. My primary tried me on many drugs used for fibro and I can't take them, all sorts of strange and terrible side effects, that are sometimes worse than the pain. Actually none of them helped the pain go away, but some I didn't stay on long, like the Cymbalta, one pill and I'll never try that again. Too scarey! So with the others, I had no pain relief and other wierd symptoms on top of the pain, I sure didn't need that. The narcotics are great for me. I had 2 minor surgeries, plantar fasciotomy, well, both feet at different times (very successful for that problem) and a breast lump removed a couple of years after that. They gave me narcotics to help with pain from the surgeries. That's how I learned how much better I felt all over with narcotics, better than I had in years! The pain from the surgeries was nothing compared to what I live with everyday. Yet you get pain meds for surgery and it's hard to find someone who will prescribe narcotic pain relief for chronic all the time miserable pain. I love the doc I have now, he's very understanding and is taking care of me. I always have a fear though that one day I'll go there and he's going to say he won't let me have any more, I've told him that, he says that won't happen since I take them right and for what they are for. He's upped the dose when the pain doesn't lessen as much as it used to, I don't have to ask, he volunteers that if I tell him it isn't working. Between him and my neck doc, I feel pretty well taken care of now and can live a more active, productive life, as in doing some enjoyable things and being able to do work to earn money. The narcotics don't make me feel drugged at all, whereas the fibro drugs certainly did. I have tried some narcotics that were awful too, we weeded them out.
 
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mistybluerose67 responded:
Oh my dear.....I can totally sympathize with you... I have been there and done exactly what you have experience. It took me over 120 doctors, 4 years, and 2 bankruptcies due to medical bills that i couldn't or insurance would not cover.... I havesyringomyelia , fibromyalgia, chronic fatigue syndrome, depression, insomnia and narcolepsy, from C2-C8 I have bulging discs, herniated discs, bone spurs, and pinched nerves. From T5-L3 I have syringomyelia, from L1-S5 I have bulging discs, herniated discs, bone spurs as well as a broken tailbone that didn't heal properly.... NOW, I will tell you how to live a functional life... It is called the Fentenyl patch (Duragesic). I have been on it for 10 years and it is the only thing that allows me to function at all. I too stay in bed after work due to exhaustion, but at least I am no longer bed ridden......I was for 1 1/2 years....




Please contact me anytime and I would be happy to tell you what your options really are.... Good Luck..


Michaela Wagie
Pain Survivor
snowshoesiamese@gmail.com[br>


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