I suffer from severe joint pain in all my major joints!?
Question posted by robsgirlamy2009 on 14 March 2013
Last updated on 10 March 2020 by adoptmeow
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 :(
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5 Answers
AD
adoptmeow
11 March 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?
Votes: +0
CA
cala97
28 April 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. :((
Votes: +0
IN
Inactive
16 March 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
Votes: +1
RO
robsgirlamy2009
16 March 2013
Yes! It started just all if a sudden! They have mentioned autoimmune but they are leaning towards isteoarthritis cause I went into menaoayse at 18 years old due to premature ovarian failure! The doctor also mentioned lupus but no one really is telling me much. They want the specialist to do all the testing etc... It's frustrating the "not knowing" and it is just progressively getting worse n worse! Nothing in my family history but I have never been the heaviest if people! But never suffered joint Iain and stiffness as well as my muscles until after I broke my foot... Since then its just been all down hill! I switched family doctors cause he was just giving me medications and I want answers! Yes, I need the medication for pain but u want to know why... So just one day at a time for the moment! I go Monday to get ultrasound guided cortisone injections in my hips for bursitis... Fun stuff... :( Thanks for the advice :) take care n keep in touch :)
DC
dcruzer80920
24 July 2013
Please check for Celiacs disease. I just spoke to a doctor. All your symptoms sound like this could be it. They say it even causes depression!
IN
Inactive
25 July 2013
Hi dc, you just may be right. 80% of the wheat grown in the US is genetically modified, so many people who don't even have Celiac disease are having anti-inflammatory reactions. What a shame - our country is ruining out food, causing so many people so much pain and problems. - EJ23
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
Votes: +1
RO
robsgirlamy2009
15 March 2013
Thank you! Very good advice! I am trying to be a bit more gentle with myself and be okay with the days that I cannot do much! On the days that I feel decent I do what I can without over doing it because than I pay for it the next day! Thanks for the advice! Take care of yourself too! Keep your head held high and your heart full if live :)
BN
bnagoh
14 March 2013
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
Votes: +2
RO
robsgirlamy2009
14 March 2013
Thanks. It's just hard cause I enjoy being active, working, camping, yoga etc... And having to rely on others is hard for me as I am us usually quite independent. Plus the person who is taking the most care of me besides my doctor is my husband and he has several issues with his back that cause him pain so I feel bad that he is the one taking care of me! I am a wife and a mommy and was nurse... I should be the care giver... Lol... I feel he is worse off than me! Thanks for listening. Does the fentanyl work? My family doctor hasn't gone there get but if it works I would rather be on one medication than a cocktail! Do I get this from him or the pain clinic? I will keep you in my prayers and take your advice :)
SN
Snitch1960
21 Dec 2014
Hey, i know this comment is about a year too late, but I thought I would answer anyway. I am an RN also. I became medically disabled in 2009, only 5 years after receiving my license. I was (am) disappointed in this change in my life, but I am working (still!) to accept it. Fighting it does NOT help. Reality, is that our bodies do wear out. It is important to accept this, and let others help you. I agree with you, we are used to helping others, but you have to change the way you do that. Instead of it being the "labor" part, now you can help in a verbal way. I totally agree with the comment above, (bnagoh), as I have broken my back, and have the same lifting/carrying limitations. It is rough to depend on others at first, but it does get (a little) easier over time.
My medications used to be opioids also, but I didn't like my increased dependency , and semi-drowsy state of mind while on them, so I am taking Buprenorphine/Naloxone (a mixed narcotic agonist-antagonist) to have a clear mentality and increased pain control. The transition from opioids to this combination was kinda difficult, but very beneficial for me. Good luck! Snitch
