Please need help about what is normal pain

[Dshell]

Hi all,
I feel a bit of a slouch as i haven't been helping others by posting my own responses in sometime and yet am here asking for help. Sorry for that.

I have been diagnosed with fibromyalgia, severe sleep apnea and a fairly severe case of IBS.  I am also constantly battling anxiety and depression.  I had to quit work in April of 2008 and have gained about 100 pounds in two years.  I am 33 years old.

Through the support of this network I was able to speak to my doctors about some medication changes.  I am now titrating off of lexapro and onto cymbalta, have begun taking all of my neurtoin at nigh and began tramadol.  The great news is my pain is imporving, a lot.  However, I am feeling very "drugged" with all of these changes and have had NO energy.  Sometimes I am so tired and weak it is difficult to make a fist.  My apnea is such that I feel I could sleep 24 hours a day and not feel rested.  I recently got a C Pap and am waiting for a thermal house as I am experiencing "water up the nose" from condensation build up and the ace bandages wrapped around the machine did not work.

So, here is my question and or need for support.  As a single women, when I quit my job in April 2008 I had no idea my group of illness would make it impossible for me to go directly back to work.  So I cashed out my 2 1/2 years of retirement and have been living on finical aid and state disability while I struggled to finish my master degree at home. Through miss communication with state disability I found out last Monday my benefits are exhausted and I have not yet been awarded SSI (3 months in process).  So, as of right now I have $200.00 in the bank and no income.  I have been despondent but not totally unproductive in the last week.  I signed up for a PhD program for the finical aid and went to social service today.  

Today the university said PhD students don't receive the type of financial aid that graduate students do so I would only be receiving about 500.00 per quarter instead of the 5000.00 I received as a graduate student.  Social service said I could receive share of cost medical (meaning I cannot pay my 500.00 month insurance anymore) and will loses all of my doctors.  Social service also said I will probably receive some food stamps but as a single woman they could only loan me 297.00 per month.

I am desperate and near homelessness.  I had to finally speak to my parents (how are divorced and remarried) because I am really at a loss.  They said I haven't been trying to get better.  That I have to learn to live with my fibro, which I think is true but I was only diagnosed a little over a month ago.  They said I haven't been trying to lose weight or use my water nose blowing apnea machine.

I have seen at least 20 doctors in the last few year and nearly bankrupted myself trying to pay medical bills in the hope of regaining my life.  I am 33 and single, sitting at home for the last year and a half, alone is not my idea of a good time.  I quit drinking over two years ago but the rest of my family still have drug and alcohol problems. My family have been hit by this recession as we all have, however, for example this means my father only has a net worth of say 1.5 million instead of 2.5 million.  They are not willing for me to live with them when I lose my apartment the next two months due to this idea that I am fat and not trying to lose weight, haven't been able to sleep and have had a pain reduction for 2 weeks. They said I should get a job.

Has anyone else had this type of reaction from their family?  I send them information about my illnesses and they refuse to read it.  I am so scared.  I have done all I can do myself and I am going to lose everything and have no family support. I don't know where to turn.  I am having dark thoughts.  I have tried so hard and now to no I am going to lose everything and my family does not support or believe that I have been or am ill enough to not work is too much to bare.

Sad, only hope is SSI where I might receive a whooping 1089.00 per month to live on IF they find I am ill enough to live in poverty.

[Tuckamore]

Hi Dshell,

Sorry I am not Sandee but I wanted to thank you anyway for the update....and to tell you how happy I am that you have found at least a temporary solution to your financial situation. And it sounds like the PMP is headed down the right road with your medically issues.

Good Luck
Tuckamore

[Dshell]

Sorry....should have been Sandee :)

[Dshell]

thx...Otis is DaMan!!

I began Lyrica yesterday (I think it is considered yesterday now as I have not slept) and I am very hopeful.  My dad has come up with a suggestion, he will put the same money he gave brother's for a down payment for their first home away for me to be used for rent. He will do this if I move to a smaller apartment.  I am very grateful and yet surprised every time I have a twinge of pride, surprised I have any left that is.  My father's master plan will give me another year to get on my feet.  He was very clear the other day that if I cannot repair myself in that time I will be living by my means, which he said, "will probably be a rat infested mobile home."

As I look around my home trying to decide what I will have to get rid of I keep remembering to be gracious and thankful to have this opportunity at all.  My father's comment scares me a bit as I feel is contains a bit of blame and a touch of "you could be doing more."  Plus, I don't like rats.  

Sandi, we must have had the same thought because my father made this declarations after I wrote an email to he and my mother with a link to a very assessable inventory of fibro and IBS symptoms including the anal fissure I am now trying to heal.  Ouch.

I have kept the fight alive and was seen by a pain specialist yesterday, against my evil rummy's advice.  I felt he was exceptionally helpful.  He has started me on Lyrica and is concerned a may have a compounding issue to my fibro pain as the only pain medication I have had work thus far is Norco.  I have even tried tramadol, which I understand to be very good for fibro.  He has referred me to physical therapy, MRI and a surgeon for my, still unresolved, sleep apnea.  And so, after a few very dark weeks, I have, yet again, found hope.  Thank you all for your support.

[OtisDaMan]

I suspect your parents mightn't be that receptive to it, but I'll suggest it anyway. Either organise for a joint meeting with your GP and parent(s) so that the GP can explain to your parents just how crippling Fibro and IBS can be; or, get your doctor to write a letter that details his/her diagnosis, information on what it means, and what limitations it places upon you on a daily basis. In either case, ask the GP if they can make it clear as a bell that it's not just you and a lack of willpower, but rather, anyone else with these conditions would be physically and mentally limited in the same way.
Who knows, your parents may be more likely to read a doctor's letter and to appreciate the doctor's views on your daily difficulties,

I too know what it is like to stop work due to a major illness; I have spent down what was once a huge house deposit, and will be starting again (should work eventually take me back) on saving up. But I am alive and my pain is eased by pregabalin (aka lyrica), even if it does make my brain foggy and my limbs randomly jump on the odd occassion. So life is okay.

All the best,
Regards,
OtisDaMan

[sandee1818]

I wanted to give you a reputable site to send your parents on how debilitating this disease can be.
I was looking for one that list all the facts and is easy to read and understand.
I will send it to you as soon as I get it okay.
I am so sorry your having trouble with your PM and support. I feel so badly for you. Please do remember we are all here for you and will help you!:)

[sandee1818]

I am so sorry your going thru this alone. But your not alone anymore. We are here for you and will always continue to help you and support you any way we can.
Perhaps you can send some info to your parents about Fybro and they can see for themselves the pain and other problems that stem from this disease.
Please keep us updated on how your doing and your welcome to post here anytime!

[Dshell]

thank u so much.  I believe my chronic and severe sleep issues have to do with the unbearable fatigue.  Along with a sort of fog.  Low income housing application was sent today!  It has a 1-3 year waiting list.  I really hope to return to work.  I think these meds are working but it has only been two weeks.  I see a pain management specialist in a few days and still have my insurance for this month.  

Perhaps you are right.  If one has not had these issues it may be hard for them to understand.  I feel like my family thinks I am enjoying all of this time off, when in reality it is mostly unbearable solitude filled with sleepless nights and pain.  Thank you again for your comments.  I am thinking about looking into a firbo/pain support group in my area.

All my best
Michelle

[Tuckamore]

Hi Dshell,

Don't feel you have to apologize for not responding to posts, your plate is over flowing with issues. It's always good to hear from you but I am very sad to hear about your current situation.

I wish I had some magic answers for you but I don't. It sounds to me that you have contacted all the right resource agencies. I am so sorry that your parents will not help you. If it makes you feel any better mine didn't help me either when I was divorced and had a baby to raise alone, without any support. However I was able to work.

I don't know your state laws. My state is just beginning to recognize that ppl without children sometimes need assistance too. We do have housing that is based on your income, food stamps, food pantries, financial support of about 300 per month and medicaid, also based on your income. Have you applied for low income housing? If not do so immediately. I suspect their waiting list is long. The eviction process in our state is long. Many ppl are able to remain in their apts/home for 4-6 months or more without paying. Some of that has to do with our long winters. Please don't misunderstand me I do not advocate not paying your rent but when you have no where to go but the streets what can one do?

Do you have a friend that would lend you their couch until you are able to locate low income housing? Your parents may come around once they realize you will be on the street. Given the fact that they are not struggling financially I can't understand how they can turn their backs on you completely. Some ppl that have never experienced chronic pain simply cannot understand what we are faced with or they refuse to even try to understand the challenges.  

Again I do not know how your state processes SSDI applications. It has taken years for the majority of SSDI applicants that I know to obtain an approval or a denial. About 18-24 months ago our state added more staff to speed the process. I also did a lot of research into the application process. I was approved for SSDI just days short of four months. I could not beleive it. So as you receive the the mounds of additional informational paperwork to complete, do so as quickly and as accurately as possible. I know of no one else that obtained approval in less than four months but there has to be others.

Is it possible that if you meds were different or your pain managed better that you could return to work? It seems to me that you should not be so weak or exhausted. You might want to discuss other possibilities with your physician. In most instances you will require his/her backing to successfully obtain SSDI.

I am hopeful that others will post and offer their ideas. Hang in there. I wish there was more that I could offer. But we are here to support you. Please let us know how you are doing.

Good luck to you,
Tuck