... morning to get to a place where I can walk I'm week my wrists can't even pour my own teapot. Can I get disability? I am 58 years old and I am a schoolteacher but when I'm in so much pain I'm certainly not very patient
Polymyalgia Rheumatica - I am not sure I can work with PMR. It takes A couple of hours in the?
Question posted by English730 on 16 Aug 2016
Last updated on 5 November 2021
Here’s my PMR story, I’m a sixty-one year old male, who feels like he’s eighty. The best thing that could come of this, is for someone else to say “Hey, this happened to me too!”, so I hope it helps. Here goes … I retired early, fifty to be exact, for two reasons: my honey and I had our health, we had reached our financial and professional goals, having no dependents and no debt, and topped out on the job ladder before becoming political. We were ready to move on to the next chapter. Five years into a glorious retirement, while touring Amsterdam, I was bitten by some black flies on a bridge and soon experienced very strong flulike symptoms (probably Chikungunya), and what came next turned out to be the real story. I developed what is now being referred to as Viral Induced Autoimmune Syndrome or VIAS.
For all of us mere mortals who didn’t go to medical school, what that means is that I got PMR because my immune system reacted to a virus, and attacked my own body! I was lucky enough to have an internist who has a concentration of PMR patients, recognized it early, and as a professor of medicine, makes it her business to know the research, continually sorting through new developments in treatment. Bottom line for me, I got past the phase of thinking this was curable, and right to the symptoms management phase pretty quickly. As I found out, many PMR sufferers go years thinking, and being told by others it’s all in your head, it’s not. So this is where am I now, coming up on six years after all of the doctors weighed in with a consensus diagnosis. Well it’s a rare dry pleasant day here in South Florida, and at 2:15pm I haven’t really been able to get out of bed, other to take the dog for his morning constitutional, and make myself a tea and toast. Another lost day out of many. That’s not typical, but does happen regularly. I’m on 22.5 mg. of prednisone, on my way down a taper from a flare dosage of 40 mg short term. My maintenance dosage was 15 mg, but in the past year I’ve lost over 70 lbs, with several wicked flares, so we’ll see where I end up because tapering prednisone fast is a very bad idea. A good taper takes months to do right. My PMR symptoms read like a textbook, neck shoulders, lower back and hip pain. The most debilitating is the fatigue, and the most annoying is the episodic nature of the symptoms, so not being able to plan as I never know when a flare is coming. I’ve learned it’s best for me to be on the lowest dose of prednisone that mitigates all of my symptoms. The co-morbidities of two major glandular cancers, what is though to be psoriasis (PA?), and other metabolic issues, mean I’m not a candidate for the new biologics, and I’m relegated to the old time medicines, and I am just fine with that. I’m learning to live with PMR. I can’t say the folks around me understand, so it’s always reassuring to hear other PMR sufferers recount their experiences, and please tell us how did you peronally get through these types of issues? And, how’s it going now?
I agree its important to take enough prednisone to control the pain, but I found it wore off during the night. by 3 am I would be miserable and couldn't sleep. So it worked much better to take 1/4 to 1/3 of my daily dose in the evening.
Regarding applying for disability, I had better results using an approved representative rather than an attorney. The SS Administration can give you a list. The person doesn't have to be close to you, but must be able to be present at any appeal hearing. They get the same percentage of the settlement as an attorney. Its easy to start the process online before you select someone, so don't waste time.
Are you taking prednisone? It helped me.
I am 65. I have had PR for 4 years. I'm an RN and I switched to a job that was mostly computer and office and managed to work for a year. Then I had to have eye surgery (unrelated to PR) and went on my employer's disability plan. The first time I applied for SS disability I was turned down. The company that had been paying my disability appealed it and I had a good disability lawyer. If I were you I'd start with a good disability lawyer. Another option is a company called Allsup. They specialize in getting you through the process and have lawyers to work with you. I got approved for SS disability nearly 2 years after I applied the first time. Good luck! This is a frustrating disease. Hang in there. If online teaching is something you might be interested in you should check into it. You are better able to set your schedule. It's less physically difficulty than classroom.
I am also 58 years old and was diagnosed with PMR 2 years ago. While I am sympathetic to anyone who has this as I have gone through a lot of pain over the past 2 years, I simply don't understand why you think you should go on disability. The prednisone helps the pain so obviously you aren't taking enough to get yourself up and ready for the day. I took my share of prednisone so I could get myself to work each day and have tapered myself off of it after 2 years. It's now been 2 weeks since I've had to take any medication. You can take prednisone and go to work each day or you can stay home and take it and pity yourself. Try to stay positive. There are plenty of people who take a small dose of prednisone and are perfectly fine. Seems like you are going to the extreme. Better for your students that you are there for them each day while taking prednisone instead of staying home. My advice to you is stay as active as possible and take your prednisone and start tapering down. It will be worth it in the end.
English: agreed this is a terrible disease. I’ve had it for 8 months. People ask me how bad the pain is and I tell them I would rather pass a kidney stone every day than have this. I have tapered the prednisone down to 7 mg a day from 20 but I feel pain gets worse every day. Not to be morbid but if I thought I had to live this way forever I would take my own life. Please tell me there is hope.
You should be able to get disability. Be aware, however, that it can take quite some time to do so. It took me about 3 years to get a hearing scheduled. And be sure you have an experienced attorney who specializes in Social Security disability working with you on your case. That is VERY important. A generalist attorney would be less expensive, but believe me, you need an attorney who is a specialist in disability. It will be well worth it.
I had worked as an RN before going on my employer’s long term disability when I became unable to do my job due to the physical challenges. I remained on the employer’s long term disability while I waited to have the hearing for Social Security disability, which took about 3 years in total. After the hearing, I received notice of my Social Security disability within about 2 weeks of the hearing date. Good luck with your disability claim!
PMR is similar to fibromyalgia in what pain refers to. Fibromyalgia was approved recently by federal law to be disabling so if you go to a special lawyer and get a doctor review you can get disability. PMR is incapacitating and the first 2 years are unbearable in pain. It will be very difficult for you to work Get the help you need, go to a good disability lawyer they usually don't charge until they win and they will win.
English; Yes you are right as far as taking as little cortisone as possible but this is something you and the doctor have to weight out. But first, it is getting your condition under control. and the answers you have so far are great and keep at it. Talk to your doctor and see about even a leave of absence until you can figure out what you have to do. Or while you are having the run around with Disability. Ps you can also go to the person with the nasty disposition and block him and you well never see anything while they are working on pulling his post. which I am sure has been turned in. WE DON'T DO THINGS THAT WAY OR LET ANYONE ELSE DO IT TO ANYONE EITHER. chuck1957 Keep us posted but you just have to click on his Republican name the circle and it well go to his profile and then there is a place to block or friend him. Chuck.
I have to agree with Windchimes123, that was a very rude comment and childish of js3000 and you don't have to comment on my answer either, I have been on this site for yrs and we are here to help and support people and not make them feel any worse then they do!!! Engish730 I am on disability do to numerous diagnoses and have been don't like being on it but it is what it is... it's really all up to the dr and ssdi meaning how it effects you daily and so on the pain etc... you get the point and from the sounds of it you r not just looking for a handout like some... don't pay no mind to that rude comment there are hundreds of very beautiful people on this site that will support you in no matter what, just ignore the rude comments...
anyway I am sure your diagnoses is documented and all you have to do is apply after you get the first rejection there is a place called community health and law project they have them in all community's but not sure where you live!! It is a none profit organization, meaning if you get turned down the first time you go there and they will get it for you the 2nd x and they charge you nothing... lawyers charge I think 33% of what the first lump sum is or something like that... that's what I did for someone told me about them when I first got severely ill... but the call is yours you can do it with a lawyer to and probably get it quicker, for I have heard of several who got it on there first x with a lawyer... keep your chin up/ stay away from negative people... I think given js3000 has been through this etc they ought to act like an adult and apologize but I wouldn't hold my breath... lol Good luck hun and keep us posted we are here for you well I am and I am sure tons of others on this site as you can see!! Here is a site I found for you if you haven't seen it already but if your's ain't on there doesn't mean you wont qualify it on depends on numerous things... God Bless and good luck and keep us updated..I will add you as a friend... take care... angel1662
Getting disability is not easy with PMR. As suggested, working with a disability lawyer will yield better results than trying to do it on your own. If you are in pain, then your Prednisone amt is not a high enough dosage. You should be pain free. It doesn't help the fatigue and other symptoms but pain free is a start. There is an excellent group on Facebook called Polymyalgia Rheumatica with people from all over and lots of great information. It is also a very supportive group. I recommend you join.
Wow JS ...
That was a bit harsh ! I know you must be angry for having gone through it undiagnosed. Don't you have a bit of empathy towards someone facing the loss of her independence ?
Writing this is out of character for me.
I think if you address your anger issues it may help you feel even better than you do now.
I don't know the answers to your questions unfortunately.
What I've heard about disability is that it takes awhile to get approved. It's best to work within the system. By this I mean hiring a disability only lawyer. He probably will know a doctor who knows how to expedite your request. Someone who is unfamiliar may make a mistake in the wording or the paperwork and cause you needless delays.
I applaude you for being proactive. You must have been a teacher for most of your life. It's now part of your identity !
You are right in recognizing that students require you to be at your best and a lot of PATIENCE ! I can't imagine being in pain and dealing with the little ones who depend on us.
As an outsider, what I think best for you is to get on disability. Get yourself feeling better. Lastly, volunteer your services to the school where you work and probably enjoy.
There is a lot to be said for volunteerism. It's rewarding to people to know that you are there because you choose to be and not for a paycheck.
I think it's one of God's way of helping people in pain because it provides DIVERSION. Diversion is a recognizable treatment in pain management.
For me it was better than pain Meds.
You will be busy and at the end of the day you will feel good about yourself.
I'm sorry for what you are facing now.
Perhaps someone could respond and address her situation who has had experience.
I'm sorry but I couldn't hold my tongue when it comes to lack of empathy by someone who has gone through it.
Perhaps (to "helpful" commenter )if you used your knowledge to help others you could also feel good about yourself.
If I misread your intentions, I apologize.
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