also need to vent

Discussion in 'Fibromyalgia Main Forum' started by murillomod, Dec 3, 2002.

  1. murillomod

    murillomod New Member

    I really do not understand our system, my husband has been very sick for 1 year, after seeing many specialist, his rheumy has said he has this DD, but does not want to treat him, says to go back to his primary doc.,his primary does not believe in fibromyalgia, all this time he has been on state disability , which ends next month, applied for SSDI , but they said not to hold my breath on that, I asked how were we going to survive without his income they told me to go on welfare!!I did not appply for SSDI earlier because I kept thinking he was going to get better.My husband has gone down very fast, he now needs a cane to walk from so much pain and his legs feel they want to give out at times.He is on the duragesic patch, neurontin,and lortab for really bad pain . I wish I knew of someone to listen to me!! Thanks for letting me write this out because I think you guys are the only ones that understand this nightmare we are living.
  2. murillomod

    murillomod New Member

    I really do not understand our system, my husband has been very sick for 1 year, after seeing many specialist, his rheumy has said he has this DD, but does not want to treat him, says to go back to his primary doc.,his primary does not believe in fibromyalgia, all this time he has been on state disability , which ends next month, applied for SSDI , but they said not to hold my breath on that, I asked how were we going to survive without his income they told me to go on welfare!!I did not appply for SSDI earlier because I kept thinking he was going to get better.My husband has gone down very fast, he now needs a cane to walk from so much pain and his legs feel they want to give out at times.He is on the duragesic patch, neurontin,and lortab for really bad pain . I wish I knew of someone to listen to me!! Thanks for letting me write this out because I think you guys are the only ones that understand this nightmare we are living.
  3. Shirl

    Shirl New Member

    I am so sorry to hear you are having so many problems, wish I could help.

    You just vent all you want, if it just helps a little, then thats better than keeping it to yourself.

    I can't help with SSD, but I know others here are very familiar with that, so they will be sharing with you.

    You take care, and I do so hope your husband is feeling better soon.

    Shalom, Shirl
  4. pam_d

    pam_d New Member

    ...and I'm no help either on the SSDI issue, but as Shirl said, others here are well-versed on this topic, so hopefully they'll respond soon.

    You need to find a doctor who does believe in FM, if you truly feel this is what your husband has. I don't think the specialty matters much---rheumys, primary care docs, pain specialists, physiatrists----ALL frequently are disbelievers, OR can be knowledgeable about FM, & supportive caregivers. It's finding the right doctor. AND continuing to educate yourselves, some of which you can do right here, so that you will be knowledgeable about what you're dealing with.

    I wouldn't waste time seeing a doctor who doesn't believe. I would pull out all the stops to find one who does & can treat your husband.

    Good luck to you both, and vent anytime you need to---we've all been through the "doctor mill" (many of us are still there) so we do understand.

    Hugs,
    Pam
  5. karen2002

    karen2002 New Member

    In my opinion you need to find your hubby a specialists. There are lots of good lists, one can be found on this site under Doctor Referral (purple tab, top of page).

    There are also other lists available. Even if you have to drive a bit--seeing a Doc who believes in, is willing to treat fibro, keeps abreast of research, and help with benefits, is worth it.
    I would make that my number one quest. I have been the other route, and until I found my "Good Doc", I was receiving no treatment at all. It has made so much difference. Call some that you find on the list and ask how many fibro, chronic fatigue patients he or she sees, etc. You can interview on the phone, prior to making an appt. and saves energy, and money in the long run.
    Karen
  6. northwoodssue

    northwoodssue New Member

    Dear Murrilomod:
    I am currently awaiting social security court date, so I hope I can help you some with this. First, like Karen says, it sounds like you need to get a rheumatologist who is interested and supportive. Or maybe an internal medicine specialist who is sympathetic. You need someone with an md who will back you in this.
    Second: Don't give up on SSD. In the past year there have been new rules and regs for SSD and fibromyalgia. This makes it recognizable as an acceptable disease for SSD, which was not the case only a couple of years ago! My attorney told me all this, and he is very active with fms patients. FMS cases ARE winnable now!!!!! So, find a good attorney. I contacted the fms network for a phone number and was referred to a site for recommendations. Please call them at #1-800-853-2929.
    I wish you all the best luck. There is a doctor out there who cares, just got to keep looking. Don't give up! Also, don't pass on SSD because an uninformed md told you so. It isn't corect. We all have a better chance now!!!
    good luck.
    northwoodssue
  7. murillomod

    murillomod New Member

    Thank you for all caring, If anyone knows of a doctor in Modesto ,CA- that will be a great help. The only other problem I would have with that , is that my insurance will only let me see doctors in my medical group. We will see his primary next week and confront him on how we feel and tell him if he does not know how to treat this , to please refer us to someone who knows. Other than trying differnt medications, what else do you suggest that can help relieve yhe pain?
    Thanks again
  8. kadywill

    kadywill New Member

    and I agree that the system that is available to us sux big time!! I am so sorry for your husband and you and I realize that you are frightened. If you need the welfare, apply for it....that's what it's there for. You have paid into that system all of your life, I am sure, and you deserve the help. Believe me, I'll do it, too, if it comes to that. It may well come to that for us as well; I've only been out of work for three weeks now. Please do this....you don't need further worry~~you have suffered plenty!
    Love,
    Kady
  9. Mikie

    Mikie Moderator

    Who specializes in SSD. S/he will be able to refer you to a good doc who can document the disability. SSD pays retro to six months after the initial date of disability when one can no longer work. It can take two years or very little time depending on the state and the illness and how well documented the illness is. It is well worth the effort. I had a court date, but the judge took early retirement, so am awaiting another court date. I filed almost two years ago. After paying my atty., if I win, I will receive somewhere in the neighborhood of $10,000.

    Your atty. will receive nothing unless you win your case.

    Love, Mikie
  10. murillomod

    murillomod New Member

    Ww heard from social security today and they want my husband to fill out a form called "Daily Activities Questionnaire"- has anyone had to fill this out and if you did how did you answer the questions? They ask some really strange questions and they ask you to answer in very specific detail.