It started in May of 2012 in my feet and has now spread to all my major joints! I can barely walk anymore and also I am losing muscle strength. Like if I squat down I cannot get back up without help. I am on several pain medications but nothing seems to completely work. It makes the pain tolerable most days but there are days that nothing works. I have lost my job and now my home. I am receiving government benefits but its not enough to cover my bills. We have had a whole body bone scan done and I do have some sort of arthritis and inflammation in my entire body but won't know for sure what until I see the rheumatologist in June. I go to the pain clinic in 2 weeks and I am curious if anyone has any idea what might help more than what I am currently on which is MS Contin 60 mg twice a day, Norspan patches 10 mg, endone for break through pain and targin 20/10. I am getting ultrasound guided cortisone injections in my hips next week and I hate needles but at this point I just want to be out of pain as this has definitely effected the quality of my life. I am unable to be the Mommy n wife I want to be and do the things we used to do as a family and even the things I enjoyed personally like yoga. Basically I am left with Reading and meditation! Any advice would be much appreciated! Anyone ever been on fentanyl? Does it work? Please help as I just want to be pain free. Next step is going on disability and I am only 37 though I feel 87 :(
Hi! Just reading what you are going through seems so much like what I've been through. I am waiting a fusion in my neck and I have taken fentanyl for about a year. What happens with the opioid pain medications is that your body gets used to them and then they don't work as well. So changing the medications every year or so can be very helpful. I have still not accepted the fact that I am disabled even though I have been on disability for 7 years. It is a fact and the most important thing you can do is to not try and do to much. Sometimes the hardest thing for me to do is to let my family take care of me. No lifting of anything heavier than 5 pounds. You will be surprised at what weighs that much and more. But the reason is to not damage your discs anymore than they are and once they are broken they usually stay that way.
I have discovered my whole back has bone spurs and herniated discs and most will not be helped by the fusion. So I have found the best pain Doc they can be a pain in the neck but understanding can really help. I really wish you the best but you can do it. Take care Bertram
15 Mar 2013
Oh Hun I understand your frustration with the pain. It can become all consuming and its hard to think about anything else. First thing you need to do is sit down and write down exactly the history of your problem. Were you sick with a cold or flu just before it started? Did you have any injuries, serious cuts or bruises? So basically try to think of everything that was going on with you in the month or so before the pain started. There are a number of types of arthritis that start due to other problems or injuries. Next make a list of everything that is wrong, not just the joints. Do you have problems with your digestive system? That's everything from upset stomach, heartburn and all the way down? Also you don't mention if you have problems sleeping though with the pain you probably do. Did you have any problems with sleep before your pain started?
These are all things that your doctor needs to consider. Often we are in so much pain that we don't think to tell the doctor about other problems that seem minor but we need to tell them everything that is wrong, even the little things that don't seem important. This is really important to have this ready for the rheumatologist. I know that your appt isn't until June but do it now as you never know when you could get called in it he/she has an opening. Often when I have an appt with a specialist I have called to let them know that if there is a cancelation that I only need X number of hours notice to be there. That has shortened my wait a number of times with specialists. I don't have any suggestions for the pain because I'm not a doctor and I don't know what other things are happening with you but I really feel for you as I have been where you are now. I was 35 when my body started to fail me and it has been a long road that I am still traveling to find the answer as to what exactly is wrong and what to do about it. I have been given so many different diagnosis and drugs it is scary, but I refuse to just give in and give up. Like you I loved being busy and still try to be as active as possible but sadly there are many things that I love that I can not do. But be brave and hang in there. Do as much as you can when you can and you will find an answer. Take care of yourself and you will be able to take care of your family again. Your friend Nancy
16 Mar 2013
Your pain just started all of a sudden? That doesn't sound like arthritis. Have they checked for Lyme Disease, or an autoimmune disorder? A healthy person just doesn't go from no pain to pain everywhere overnight. Something has happened. If I were you (and if I'n understanding you correctly) I'd be beating down the door of every doctor you can find to determine what is causing this. Please take care! ElizaJane
28 Apr 2014
Fentanyl does NOT work, I tried it, n NO! I suffer from severe joint n nerve pain. SORRY, BUT I WOULD ADVISE ASKING FOR SOMETHING ELSS. :((
11 Mar 2020
Hello Amy. Your question posted in 2013 was answered by a few people who thought your sudden increased widespread pain level may be from an autoimmune condition. I had a similar experience where a variety of pain meds had no impact. Then the third Dr I went to diagnosed polymyalgia rheumatica. Three hours after the first dose of prednisone I had marked pain relief and much improved mobility. For people who are still reading your Q&A can you share what was found by the rheumatologist and how you are doing these days?