This post turned out longer than I expected, so I apologize in advance.
I've been doing a lot of thinking lately and have decided to try for disability. The combination of cymbalta and nopal has helped immensely, but my body will just not cooperate with me when it comes to any kind of physical activity. I figured this out earlier this month when I tried to get some stuff accomplished.
I decided to make these jar dinners; they are basically like hamburger helper, but you make the mixes yourself and store them in mason jars. I was pretty ambitious and decided to make a 90-day supply. I figured if I was careful I could do it in about two days.
The first day was okay, I took frequent breaks and did not lift any of the boxes of full jars. At the end of the day I felt a little tired but mostly ok. Then the morning of day two, I woke up with the worst back pain I've had since I fell while I was pregnant. I decided to just take some meds and push through, since I was right in the middle of this project and didn't want to quit. I took breaks every 10-15 minutes and got as much help as I could, but by the end of the day I could hardly walk, even with the percocets.
I didn't get it all done, so the next day I was back at it, even though the pain was horrible and I could hardly stand. I ended up borrowing a cane because I felt like my legs were going to give out on me when I would walk. This was July 3-5, and I'm still having trouble with my back.
I can't distinguish whether it's from the fibro or from the back injury, but whatever it is, it's been miserable. I tried to pick up my son the other day (he weighs 30 pounds) and my legs gave out under me. Luckily we were next to the couch so I didn't hit the floor, but I think it scared both of us. I've also lost a scary amount of hand strength, so much so that I can't open bottles or jars at all anymore. Right now I'm having one of those hurts-to-sit-down flares too, so I'm just plain miserable unless I'm sleeping.
I've got an appointment with my rheumy on August 1st, and I'll talk to her about it then. I've already talked to my therapist and my chiropractor, and they have agreed to help. My chiro actually said he was surprised I hadn't applied a long time ago with as bad as my back is. He told me that he would do everything he could to help improve my chances of being approved. So lucky that he's such an awesome and caring guy.
I've been thinking about this for a long time. I haven't been able to do massage since December '10, but I haven't taken any action because I just wasn't sure if I could maybe do something else if it came down to it. I think I answered my own question. If I can't do something as simple as filling empty jars, in my own time, at my own pace, without seriously hurting myself, how could I work a regular job?
I know a lot of you work, but I don't see how you do it. You are stronger than I. I think about you all often, sending extra energy and love your way.
Wish me luck.
The following user gives a hug of support to caribear: VintageKym (08-14-2011)
I do hope you can get the disability . I'm sure you know the drill, file, get denied and hire an atty. Back injuries or problems can be as bad as F M causing muscle weakness and spasms. Get to the chiro before you loose it and fall again, we don't want to see you or your little guy get any additional pain.
I've been thinking along those lines of disability lately myself.
I was laid off my last job about a yr and a half ago and I'm pretty sure the FM mush brain had something to do with the decision of it being me even tho I never did tell my employers.
The Following User Says Thank You to WoodsWalker For This Useful Post: caribear (07-15-2011)
Good luck! I applied and was denied twice and then got a hearing with a federal judge. I won, and the judge actually commented that he understood how difficult it could be to have multiple problems going on and then deal with fibromyalgia; that it would be impossible to function at a reasonable level. I think he must have a family member with it and can appreciate the level of impact it can have on someone.
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The following user gives a hug of support to mim: caribear (07-16-2011)
The Following User Says Thank You to mim For This Useful Post: caribear (07-16-2011)
Caribear~ I had a back injury also. After I was healed up, if there is such a thing.... I was able to manage. I've had CFS for years... But, when the Fibro hit, the back pain was the first symptom I noticed. My husband would sneak up on me, I'd jump then squeal in pain. I quit taking walks to our shop & back. If I step wrong r step in a hole, absolute pain. Feels like I have bones rubbing together while hitting a nerve at the same time. I can't lift over 20 pounds. I have tried... a few times... Each time afterward it felt like I had someones fist balled up in a knot pushing on my back. Then of course sooo stiff & sore I could hardly move. Takes awhile to get through it... Anyhow, I have seen a Chiropracter & some kind of back Dr that I don't think knew much... Severe Degenative Disk, Arthritis & mild scoliosis. It wasn't until after seeing them I was diagnosed with FM. I honestly think the FM amplifies the back pain...
I'm also known for overdoing it & paying the next day. Then popping pain meds & doing it again. Boy do I pay after that... My Rhum won't prescribe anything other than Tramadol Which does help, 2 hours later & barely... I've been able to get my hands on Percs which help when it's really bad...
The paperwork is a pain but go into the SSI Office with your ID, Social Security Card, any copies of income, ect. Talk to them. They'll get you started. I got my first denial but need to get ahold of Allsup to see if they can help.
Good Luck & keep us posted!
When I got sick I had to give up my business and went to work part-time in a school. I could go home and rest afterwards and I knew how to pace myself. I was then injured by the negliance of someone at work and tore up my back and wrist. I had surgery on both. I applied for SSD based on my back and the fibromyalgia stating I could no longer even work part time. I was denied the first time. I asked for reconsideration and was turned down. I was recovering from the back surgery and didn't file the paperwork for a hearing. A year later I filed again and a month later I was approved. I don't know if it was my back wrist fibro or all. I don't take meds except for over the counter and 10 mg of Pamilar at night for sleep.
I cant imagine lifting 30 pounds and my legs give out of me too. My spine is very unstable now and need a fusion.
It can be a long process sometimes and very frustrating. I found following up on paperwork is very important. One important paper had not been sent in by my work and SS sat waiting for it. I asked if I could fax it to them myself and it was accepted. That probably saved a lot of time as everything was just sitting. Good luck
The following user gives a hug of support to Mel52: caribear (07-17-2011)
The Following User Says Thank You to Mel52 For This Useful Post: caribear (07-17-2011)
Being here is so amazing to me, I can hardly believe it! I read stories like yours I can identify with you right away. I haven't been to a place like this since I was first diagnosed almost 20 years ago. Back then we were all like freaks and outcasts, I know to some people we probably still are but you should have seen what is was like then! And getting "disability", you could pretty much forget that ever happening.
Back then we'd have to find some oddball Dr., who was often involved in a non-traditional practice, that was willing to at least try various methods, although at times unorthodox and even experimental to alleviate our symptoms. Often these doctors were considered a kook themselves just for even believing such a disease existed!
I'd go to one of these doctors back then and meet people there that were experiencing many of the exact same symptoms as I was, and it was such a bonding experience, it was incredible! Anyways, sorry for babbling on, but I'm just so excited right now, because this forum feels a lot like that doctors office back in those days.
I'm glad to see many things, including the stigma attached to having this disease has at least somewhat improved. And I hope the qualifying for "disability" aspect of this has also changed for the better.
Try not to get too upset your claim is denied the first time you apply. If you are denied there are lawyers that specialize in representing disabled people to obtain disability benefits. If you are denied, this can be a good way to go; something to consider.
I hope all goes well for you! <3
Last edited by Sentinel; 08-02-2011 at 11:33 PM.
The following user gives a hug of support to Sentinel: caribear (08-03-2011)
The Following User Says Thank You to Sentinel For This Useful Post: caribear (08-03-2011)
good letters from your doctors, an attorney, and you may be as fortunate as i was. i did all the leg work, gathering records and such for the attn. sped things along much faster.
i got it the first try. it was the letter from my therapist that sealed it for me, along with well documented health care. i did have to see their doctors 1 time. a rheumy and a shrink.
this was 17 years ago when fibro was still a hidden disorder. however, my therapist said in her letter that i would not be able to handle the daily stresses of a job. social security used that specific line in my letter of approval. i was given a mental along with underlying health problems listed as the cause. cute way to avoid the fibro aspect, giggle.
good luck little bearbuddy.
bear hugs, love and peace,
The Following User Says Thank You to bluelakelady For This Useful Post: caribear (08-03-2011)
I went to see my rheumy on monday and I asked her about it. She wants to take xrays and an MRI of my lower back before she'll sign off on disability since I will be including the back problems as one of the causes. It's just gotten worse since the beginning of July. I've had sciatica for going on three weeks now. She was shocked that none of my other doctors had done either of those tests before. My chiropractor offered to do xrays when I first went in to see him in 2004, but I declined because I just wanted to be adjusted and get some relief from the pain. I don't think anybody else ever took me seriously enough to do any tests to see if something was actually wrong with me.
I went in yesterday for my xrays. Apparently I looked pretty bad because the lady in registration kept trying to put me in a wheelchair. I said no thanks, that I would be ok. When they took me back to do the xrays, after I was done the technician came out of the booth with a funny look on her face and then she asked me if I wanted a wheelchair to get back out to my car. I chuckled and said "Is it that bad?" She just blinked at me and told me that they were not qualified to give out results and that I would have to wait to discuss that with my doctor. Then she asked me again if I wanted a chair.
I'm waiting for a call to schedule my MRI. I will be interested to see the results. My rheumy left for vacation yesterday, so I'm not sure if I will have to wait until she gets back to find out what the results are or if the NPs there will call and talk to me about them. I guess I'll find out soon enough. I'll re-post when I get some news. She did prescribe me tramadol and flexeril, and finally told me what those lumps in my arms are; the fascia around my arm muscles is so constricted that it's causing the muscles to bulge in certain areas. She said it's not a big deal and there's not much they can do about it. At least someone finally acknowledges that they are actually there and I'm not just imagining them.
To everybody else who is struggling with this process: hang in there. They make it hard on purpose because they want you to give up. Just hold on. I'm sending you all prayers and love and support. <3
Last edited by caribear; 08-03-2011 at 11:45 AM.
Reason: forgot some stuff
you can get a copy of your results from the facility where you had it done. you may not understand it all but you will have the computer to do research on and find out. just go to med records and sign a release. you will need it for any other doctors so there should be no charge. same with the MRI. you don't have to wait for the doc to get back. just need him back to help you with the next step. call the facility first and be sure they have them in med records. that way it will be ready when you get there, no waiting.
i'd be tripping a little on the wheelchair but most likely you just looked worn out and they could see that. been there, giggle. i take the chair! if they can see it on my face it's time to stop playing strong girl and take the ride.
glad you got one part done. let me know if you go get them, please?
ps. you won't get the actual x-ray but you will get the written report on it, same with the mri unless you ask for a c.d. of it. again should be no charge as it is to share with other doctors.
Last edited by bluelakelady; 08-03-2011 at 11:49 AM.
Reason: add post script
The Following User Says Thank You to bluelakelady For This Useful Post: caribear (08-03-2011)
Thanks blue, I'll definitely let you know. I do want to get a copy of all my medical records. I have some already but not from my family doc or the hospital. I'll probably broach that next week because this week looks to be pretty busy. Well, busy according to my standards.
so sorry to hear about your pain, i actually work at a very physical job at a chocolate factory. luckily i have family medical leave. somedays i feel like i need to go on ss, but unfortunately my hubby is disabled and is on ss so we need my insurance. lately my pain levels are very high and i have been missing work. my rheumy moved his practice like 2 hours away so i don't have one anymore. i just don't know what to do somedays. mybody hurt so bad last week at work i had to leave early and i missed the next day too..i couldn't sleep because my legs hurt so bad...I am very frustrated because i just want to feel better so i don't miss so much work. i can handle pain, but not like it has been..my legs are really swollen too so that doesn't help...ugh! I hope the drs can help you out...xoxo
Last edited by Administrator; 03-30-2013 at 04:42 AM.
The following user gives a hug of support to pumpkinqueen: caribear (08-14-2011)
caribear, have you heard anything from your xrays and mri's. I guess that would be a little freaky having them ask if you wanted a wheelchair. I hope all is going well, hang in there sometimes disability takes a long time, my hubbies took 18mo. and he was in terrible shape. Feeding tubes, O2 tanks, cancer, chemo, dermatomyositis disease (muscle and skin disease) he was a mess. Still is....giggle....but no feeding tube or O2 tanks now.
Yes, I got the results back. I started a new thread about it. The xray showed that my pelvis is tilted, and the MRI showed 3 bulging discs, one is ruptured, degeneration in all 3 and arthritis in two, plus a cyst in one as well. I'm still in doctor limbo with the disability because my rheumy wanted these tests done first, but she's on vacation until next week.
I'm glad your husband is doing better. Poor guy. It's unbelievable that SS puts people through so much when they're already so sick to begin with.