Fibromyalgia and Social Security Disability and finding a doctor that will support me

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CleoKay
New Member


Date Joined May 2011
Total Posts : 7
   Posted 5/2/2011 4:39 AM (GMT -6)   
I found out I had Fibromyalgia approx 4 years ago.  I did not believe it but it has been confirmed by 3 different Rheumatologists.  I have been to 5 different Rheumatolgists.   I was denied for Social Security Disability.  But I am applying again.  I definitely cannot work and I feel that I should get disability.  The Rheumatologist that I am seeing now however told me that she can heal me and does not think I need disability.  But she has put me on much better medicines than all the other Rheumatologists that I saw.  I really do not know what to do.  I have more diagnoses than just Fibro, like Interstitial Cystitis, Endometriosis, IBS, 4 herniated discs in my back, Osteopenia, the list goes on and on.  This Rheumatologist told me that I have Rheumatoid Arthritis too (even though my blood tests do not show it).  I am presently taking Planquenil, Lyrica, Prednisone, Lortab, Tramadol (Ultram), Skelexan, Multivitamin, low dose aspirin a day, Celexa, Zyprexa, Klonopin, Stool Softener, Vitamin D and Calcium and Alleve for my inflammation.  I cannot think of any more meds.   I have to take Vivarin at times just to stay awake.  My psychiatrist has also diagnosed me with:  Post Traumatic Stress Disorder, Generalized Anxiety Disorder, Bipolar Disorder, Trichotillomania, Obsessive Compulsive Disorder and Borderline Personality Disorder and Depression. 
 
Unfortunately, I was not diagnosed with any of the above disorders from my psychiatrist until after my disability was dropped.  I had a hard time getting in to see the psychiatrist in time.  Also, my attorney at the time said it looked bad because the 2 years that I was trying to get Social Security Disability I was collecting unemployment.  After I was fired from my job 2 years ago I applied for Social Security Disability and about 2 months later I found out I was pregnant and then after that I got pregnant again.  So now I have a beautiful 18 month old daughter and handsome 3 month old son.  Another bad thing is that while I was pregnant some of my problems got extremely worse and some of them got almost completely better and my attorney said that would hurt my case.  But now after my second baby was born (I had my tubes tied so I will definitely have no more children) my symptoms have come back and they have come back two fold.  They are really bad.  The attorney also explained to me that it looked bad me not going to the doctor while I was pregnant.  I explained to him that I went to a few doctors but none of them would give me meds because I was pregnant.  That was very unfortunate.  I told mhy attorney that I just suffered at home in pain and since I was not working I did not need to go anywhere.
 
So now I am applying for disability again and my Rheumatologist (who is giving me some really good meds----they however have some bad side effects like dizziness and extreme fatigue making it to where I would not even be able to work anyway) is against me getting it because she says she will be able to help me and get rid of all my pain and she said in about 3 months I will feel like I did when I was a teenager.  I do not know how she can get rid of all my problems with just a few pills. 
 
 
I need a Rheumatologist that will help me and agree to me getting disability.  I am wondering if someone out there knows a good Rheumatologist in Florida that can help.  Preferrably someone close to the Jacksonville area.  \
 
Thanks for your help

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 34373
   Posted 5/2/2011 11:06 AM (GMT -6)   
Hi there,

And welcome to HealingWell. You have a long list of disorders that should get you disability. One thing you might want to try for the fatigue is adderall. I take it and it keeps me going thoughout the day. I was even able to work part time with the right medications. I take norco which is like lortab but with less tylenol in it. I take a lot of it so the doc didn't want me taking too much tylenol as it is hard on the liver.

I hope that you start feeling better soon. I know it is hard. We all fight this everyday. But you aren't alone in the fight anymore, you have us now.

If you get a chance, check out the thread called "fibro101". It is the first thread on the forum and filled with a wealth of information.

We do have a member (moderator) from Florida and she might be able to help you find a rheumy in your area. Have you tried looking on the internet? You can often find doctor's that way.

I really wish you the best. Know that all of us here really do care about eachother, and you are not alone in this. Keep posting and let us know how you are doing.

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15136
   Posted 5/2/2011 12:44 PM (GMT -6)   
Hi, CleoKay, and welcome!  I'm so glad you found us and joined in.  Well, in Fibro 101...the second thread on the forum that Karen mentioned, there is a link to good fibro doctors.  And guess what?  There is one in Jacksonville...hopefully he still is there.  He is an Internist and a Rheumatologist..a twofer!  smilewinkgrin   His name is Marc Cohen.  If you go into Fibro 101, scroll down until you come to Finding a Fibro Doctor.  Click on Florida and it will show some doctors with their phone numbers.  I can't guarantee how good he is because I live in the Tampa Bay area but it's a start and he might be just the ticket for you! 
 
Hey!  I just googled him and he works at the Mayo Clinic in Jacksonville!  I didn't know they had a branch there.  This looks like a good one!
 
While you are in Fibro 101, check out the other links.  There is some good information there for you.  You need to arm yourself with knowledge so you can be your own advocate. 
 
I'm looking forward to getting to know you.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon....and let us know if you see him!
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

froggysmiles
New Member


Date Joined Apr 2011
Total Posts : 14
   Posted 5/2/2011 10:19 PM (GMT -6)   
Hello CleoKay! I, too, am a new member on here and share a lot of your issues. I was also told by one doctor that I didn't need disability, however in the next breath he agreed that I could not sit or stand for more than 30 minutes at a time! Needless to say, I found a new rheum doctor. I also applied for SSD and was denied. I then hired an attorney and within 8 months I was approved.

Don't give up. I've heard that they are taking Fibro more seriously now, especially because most people with Fibro usually suffer from so many other ailments. But, finding a doctor that understands fibro is VERY important. I can't tell you how many times I have seen the "raised eyebrow" look when I explain my diagnosis! Don't let it get to you and stay vigilant!

Congrats on being blessed with two precious, little angels. Keep smiling and loving on those babies!
Bobbi : )

Fibromyalgia, RA, Migraines, Depression, Anxiety, High Blood Pressure
Meds: Amitriptyline, Flexeril, Neurontin, Lisinopril, Celebrex, Hydrocodone

Normal
Regular Member


Date Joined Mar 2008
Total Posts : 256
   Posted 5/3/2011 3:58 PM (GMT -6)   
hey froggy, I was so glad to hear you got approved. I am on Short term disability from work. Getting ready to try for it after off 6 months. I am so worried. Is it true that you dont get any medical insurance for 2 YEARS after you are approved? If so what are you doing for medical insurance? I can keep mine for one year while applying. As soon as I am approved I lose my insurance from work. My Dr. also said I cant sit ir stand etc. for more then a half hour. It is because of my PA also. Its more like 15 minutes now mad  
Psoriasis and PS arthritis, Fibro,IBS,Bursitis,DDD of neck,Hypothyroidism.
Meds:Synthroid. Only Ibuprophen right now for pain. Take prescription nsaids,muscle relaxers, and pain pills when have too. Just stopped Savella for first time in 2 years. I MISS IT. Cant take it with bursitis and arthitis meds.

I thought once I found out what was wrong with me I would feel better. I thought wrong.

ak angel
Veteran Member


Date Joined Apr 2011
Total Posts : 2938
   Posted 5/3/2011 8:35 PM (GMT -6)   
To normal- After receiving disability you have to wait for 2 yrs. from the time you filed your claim. I know it sucks! I have no insurance but I have manage to stay pretty health. My medications is what can be costly. My Dr.s are working with me on the bill or making other arrangements to find other  Dr.s that go by a slidding scale. When I was working I was able to keep cobra for 15 months. So really I was just short 6 months without. I know cobra can be expensive, but Pres. Obama wrote a law to make cobra 65% less for certain cases. I was under short and long term disability before I had to leave the company complety. I am now on disability and it was all worth the wait. I could never go back to work. The biggest difference is that I can rest when I need to.  My pain is better because of less stess and rest. When I get up in the morning I have to work around by body. Sometimes I can get moving fairly well and other days it not so well. Another thing is if your work place offers long term disability take that out. I did and It paid off. They paid me why I was waiting for my disability and they continue to pay me with my social security too.

froggysmiles
New Member


Date Joined Apr 2011
Total Posts : 14
   Posted 5/4/2011 12:22 AM (GMT -6)   
Hi, Normal! Sorry I usually only get on here late at night when everyone is asleep but me!

Anyway, you can go ahead and apply for SS disability. It's true that you don't get paid for the first six months but because it takes so long to get it you should apply ASAP. I applied after I was no longer able to work at all, but they considered me disabled before that. When I had to cut my hours to less than full time is when they considered me eligible. Also, the insurance doesn't kick in until 2 years, but depending on your household income you may qualify for medicaid through whichever state you live in. I know it can be a hassle, but it is worth trying for so you can continue with your doctor appointments.

That's another thing, you have to continue with meds and dr appts while waiting for the disability to decide on your case. AND...be aware that you WILL get denied the first time and probably the second time. After that you will get a notice that if you want to appeal the denial you can ask for a court hearing. I applied on-line myself the first time and then when I received the denial letter I hired an attorney to take over the case. I had to pay the attorney after I received my SSD back pay, nothing up front.

It's also a good idea to keep a pain journal. When you go in for the hearing the judge will want to hear specific tasks that you are no longer able to perform. My attorney told me to explain such as "I'm no longer able to wash my hair in the shower without my shoulder being in a tremendous amount of pain. I can't fix my hair (dry it or straighten it or curl it, etc.).

If you want any more info, please don't hesitate to ask. I'm happy to share any of my experiences with the disability process or anything else I can help with.
Bobbi : )

Fibromyalgia, RA, Migraines, Depression, Anxiety, High Blood Pressure
Meds: Amitriptyline, Flexeril, Neurontin, Lisinopril, Celebrex, Hydrocodone

Normal
Regular Member


Date Joined Mar 2008
Total Posts : 256
   Posted 5/4/2011 10:18 AM (GMT -6)   
Thanks for all the info and tips guys. I realize that you always get denied, I do have long term at work BUT you have to be approved for that too. So Im in 2nd step now. First FMLA, short term disability, apply for long term in last 13 weeks of short term. I heard that you had to be off 6 months before you applied for SSD. DID you have to see a Dr? from Social Security?I wasnt sure if I was going to try to go back, but if I make mistake because of fatigue and pain I may get cannned! I cannot keep up with computer work because of my arthritis and that is another reason I may get canned. I wish there was a job out there that you could just work when you could. Sometimes I am out of commision for days with pain and fatigue. WHen I tried to push through it at work it just got worse untill I took a couple of days off. The guilt of putting more work on coworkers is so BAD. Oh well it is what it is. I just think after 25 years of service you should be able to slow down and work, but even part time I am not reliable, and have no insurance. Tried for a couple of years to figure out a way I could keep working but I just cant. Hard to accept. Thanks again.
Psoriasis and PS arthritis, Fibro,IBS,Bursitis,DDD of neck,Hypothyroidism.
Meds:Synthroid. Only Ibuprophen right now for pain. Take prescription nsaids,muscle relaxers, and pain pills when have too. Just stopped Savella for first time in 2 years. I MISS IT. Cant take it with bursitis and arthitis meds.

I thought once I found out what was wrong with me I would feel better. I thought wrong.

ak angel
Veteran Member


Date Joined Apr 2011
Total Posts : 2938
   Posted 5/4/2011 5:15 PM (GMT -6)   
Normal- I didn't have to see a Dr from social security, but I have known that some did. I did't need a lawyer, but I was one of the lucky ones. I made sure that my Dr's filled out the long term paper work correctly. I went into the office as they asked me questions. I made sure we were on the same page with this disability. Sometimes they get so busy they really dont understand how bad you really are. They just see you only a few min. for appointments. It usually takes about hr. to fill those out correctly. The long term disability is going to be very important for you. This is how I survive financially while waiting for my disability. They are always checking up on me and wanting paper work filled out to this day. It has been 2 yrs and they are looking a way out of paying me. I had severe depression with numerious medical problems at the time of my leaving from work. I still suffer from depression and medical problems. In ak. it takes a long time to hear back from social security. I had to call on the last 2 months and then bring some records to them to make it faster. It took 9 months for me, but I had many hospitilization during all this time I was waiting. I hope I answered some questions.
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