Just wondering if anyone suffers from thoracic back pain. I get it if I try to do chores around the house that takes longer than 15-20 minutes. It's so bad that I have to lie down and rest till it stops hurting. I am so sick and tired of feeling so bad every day of my life... I wonder if I might have PMR in addition to RA. When I complain of the mucle weakness my Rheumatologist will just take blood work to check the muscle enzymes and they are okay. I am taking 5 mg of Prednisone daily. I have been on several drugs including biologics. I am still trying to decide if I want to try Orencia or not. It's a hard decision for me to make.
My illness is a real long story so right now I would like to know about the back pain. I have hurt all over my body and I don't know what to do. I will start with the T-spine to see what you all think. I also have AS which I know causes some of my back pain. I am in the US and am grateful that I found this site. Thanks so much.
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Thanks for your reply. I think you are right, females probably do have more T-spine pain from AS than men do.
I have had pain caused by more than one autoimmune disease all over my body at one time or another. I do suffer from sacroiliac and lumbar pain. I just wish I had the strength to overcome some of the pain and suffering that I deal with every day of my life. I think I have waited patiently and realize that I may never feel better. This has been going on for almost 15 years now and getting older only makes it worse. There's no cure and common sense tells me it will only get worse. I am going to try to stay positive, because that's what everyone expects me to do. But the body can only take so much and nothing seems to help. I am going to work on accepting that too. I am 61 and realize that I am never going to feel any better... because if there was any way possible, it should have already happened by now.
May God bless all the people who suffer like we do. All we can do is hope and pray that one day a cure will be found and no body else will have to endure what we have had to.
oh I do empathise with you. I too have been coming to the rather sad conclusion that I will never be "right". I don't say that lightly - I'm talking YEARS of pain. Every week I think - ah next week might be "it". A sudden miracle cure for all this. With the PMR and fibro and years of back and neck pain - maybe its just not going to happen - but the hope of it is what keeps us going. Sorry - a bit down today with it all. And yes - still in work - as excruciating as it is most days - I feel if I give it up I've given in!! Maybe one of these days the decision will be taken out of my hands and I'll have to pack it in. Have a year to do - as we are kicked out anyway at 60. As I've said before - the fatigue is awful. But - we will have better days when its not all getting to us so much!!! Best of luck to you.
I have same sort of issues and even pre PMR I remember having that discussion with myself about 15 years ago. When I eventually had to go off long term sick and eventually went on what used to be called incapacity benefit I was "sent" on a few courses. I found the one on pain management very useful. The referral I had to pain clinic and their psychologist and physio was great and have gave me lots of strategies to manage pain. This was 10 years ago in the UK. Not sure I would get same help these days. Ultimately this process helped me accept what you have come to. So I know you don't take this acceptance lightly. I have a friend who works with similar issues. Because of changes to retirement age for women she has 4 plus more years and at 60+she is struggling. I worked out days she had left to work but included holiday time and potential sick days/recovery time she could take whilst on full pay. Maybe as you have 60 as end date make sure you take any sick days you NEED to take. Be good to yourself🌻
Hi, This is Teresa. After posting this, I saw where there are questions already on here asking the very same thing. I have been reading them and I think that I have already found some very useful info. I am new to the site so I will look around before I post anything else.
I found old postings really useful but if you have questions it's better to start new post so don't worry about re-asking a question that has been part of previous thread. Always someone new who needs same question asked. 🌻
For a start, muscle enzymes have nothing to do with PMR. That is the way they differentiate between PMR and myositis. If you have RA anyway then the usual markers for PMR (sed rate and CRP) are likely to be raised or suppressed by the low dose of pred you are on anyway.
However - I have returning thoracic muscle pain when I stand leaning slightly forwards as you do when doing household tasks. Mine is due to myofascial pain syndrome. If you have AS I wouldn't be surprised if that is putting extra stresses on your back muscles and they are signaling they have been abused too long.
Our back muscles do an amazing job of keeping us upright and accommodating all sorts of abuses: lifting and carrying children and other heavy things, carrying shopping in one hand so we are lopsided, your legs may be slightly different lengths, your pelvis may not be sitting "straight". Your back muscles put up with all that and don't complain too much until a straw breaks it! Stumbling, catching your head as you get in the car, stepping off a step and the floor is further away than you though, the bus stopping suddenly and you don't - all are enough to tip beautifully balanced muscles over the edge and they complain. Good orthopaedic specialists will tell you that vacuuming or sweeping, bending over the worksurface preparing food, especially if it isn't the perfect height - are all poison to dodgy backs. Mine in Germany used to tell me not to vacuum - haha!
In myofascial pain syndrome trigger points may form in pairs on either side of the spine, in the shoulders, about rib level and in the lower back. They can often be felt as knots in the muscle - formed by inflamed and hardened muscle fibres which are concentrated spots of the same cytokines that cause PMR when systemic. They can irritate nearby nerves, causing referred pain, and can spread their "poison" through the muscle so it contracts, goes into spasm, to try to relieve the tension. And it hurts!
I used to get a lot of benefit from Bowen therapy but it doesn't work for everyone. The best help I get now (in the absence of a good Bowen therapist) is from techniques called needling or intramuscular stimulation and from manual fascial release done by a physiotherapist or a therapeutic massage specilaist.
But I have to plug my xmas present: a Roomba!!! Does the vascuuming while I sit here at the computer. Even my husband is impressed - although he still claims he doesn't know how to switch it on. At least that is all I have to do And I'm waiting for the one that scrubs floors
Floor tiles? The Roomba Braava jet will wash them - if they are done every day you wouldn't need the steam cleaner. Wall tiles - you'll need a robot person to defy gravity...
Thanks so much for replying. I agree with everything you said. I tried PT several years ago which loosened up the tightness in my back and chest and helped tremendously but didn't stop the pain. I had been on biologics that have helped ease the pain. Two that helped stopped working and the other two caused side effects. One caused a horrible case of the shingles and I caught a cold while on the other one that almost turned into pneumonia. These experiences have almost turned me against biologics and I am still trying to decide what I should do. I am satisfied taking prednisone for the time being. My last DEXTRA test score was good. I have been on prednisone for almost 4 years. Guess I wil try my best to keep on keeping on, but some days are very depressing from the constant struggle to survive and this make me feel like giving up. I have fought these diseases for a long, long time and eventually they will win. It's so hard to put on your fake smile and pretend everything is fine. It seems to me that most people who feel good can't understand how disabling these diseases are. I didn't have a clue until I was affected myself. I know that I must make some changes... maybe hire someone to help clean my house and stuff like that. When you feel like cleaning house is almost going to kill you, then there's no need to keep doing it.
Sorry I got off the subject.... hope you had a good day!!!! Thanks for caring. I really appreciate it. I checked into the Bowen therapy and I would have to travel 80 miles to get there. That would be hard on me. Do you think I should try to travel that far away????
Will try - one site is down!! I know you do tend to have long distances in the US. And long drives are hard - may even undo the good the treatment did. Have you got a good sports massage therapist in your area?
No, not that I know of. I could check around to see. I was so desperate when I first got sick that I traveled well past Asheville, NC to a lady that did wonderful deep tissue massages. I went 4 times or more, but she was just too far away. She really helped and I even had to massage the soreness from the bottom of my feet. It was pain that I didn't even know existed until she started working on them. It caused me to scream out in pain.... yes it hurt that bad. She told me there was no way she could do it because I lived so far away so I massaged it myself and it took around two months to get the pain rubbed out. She said it could be a build up of lactic acid... but I don't know for sure what caused it. She was also a chiropractor and worked on my back and neck. After adjusting my neck and massaging it, she said it was fused together. I am a mess and would have loved to kept going to her, but it was too far away.
She massaged almost every inch of my body. One day she asked me lay on my side and left my left leg up in the air. I couldn't do it. I didn't have enough strength in my left hip muscle to lift my leg up and I didn't know it. I could barely walk into her office because my feet hurt so bad and the muscles in my legs were so weak. She help me get some of my strength built back up. Wish I could have continued to get treatments from her, but it was too far away and too expensive. I had to pay for the treatments myself. It was $195.00 for 90 min plus gas and food expenses. I couldn't afford it any longer.
I was given a perching stool by our Social Services and it helped so much, perching when washing up (not often as we have a dishwasher) peeling veggies etc. I even used to use it to perch and sit looking out of the window.
Then I finally took the advice of PMRpro (after resisting) and went to the Bowen practitioner, Joanna (really just to shut up my mate), after three sessions, wheelchair relegated to garage, then zimmer followed and finally the stool. I do still carry a folding walking stick in handbag for pavements that look dodgy. So Bowen worked for me and the beauty of it is, that if it does not work with those three one hour sessions for three consecutive weeks, the practitioner just tells you. So no long term waste of money.
I have recommended it on here but would say to you, read Tom Bowens story extract and link: 'Today Tom’s work has been taught worldwide and is taught at university level in Australia'
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And I'm waiting for the one that scrubs floors 
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