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Old 07-01-2004, 06:40 PM   #1
Junior Member
Join Date: Jun 2004
Posts: 16
asfirefly HB User
How can you live this way?

I am struggling. I have such relentless pain every day and there is never a respite, I literally can't withstand this pain anymore. I am totally alone and have no idea how I intend to live and support myself from this point on. I have been on ssi for depression for several years and they are bringing my case up for review right now which means I could lose that small amount of money I currently depend on. How do you all survive this?

I have been terribly let down by my family. They are not helping me at all. I can hardly eat some days as the pain is debilitating. I have begun methadone and fentanyl three weeks ago and still have severe pain. My sleep is still very screwed up and my depression is a killer. I have begun wellbutrin for the depression but this is not enough. I need help in my daily life, walking, preparing meals, etc. How do you all do this if you are alone? And how do you cope with the depression and isolation in addition to the severe pain?

Or do many of you not experience severe pain? Mine is unbearable. I have started to see a nice therapist which gives the small amount of support and someone to talk to but then I have to come home to my sad life. I am so lost and don't know how to live with this anymore. I would really like to know how others cope so well. Will I have to find a low cost nursing home to live in if I am so sick and have no way to support myself? This is a truly horrifying notion for a young woman who a year ago was fine. What happens to the sick when they can't survive financially?

thank you, asfirefly

Last edited by asfirefly; 07-01-2004 at 07:48 PM. Reason: sp

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Old 07-02-2004, 07:07 AM   #2
Join Date: May 2004
Location: Western Colorado
Posts: 457
taurus3 HB User
Re: How can you live this way?


I am so sorry you are living with such pani, lonliness and isolation. I know how hard it is. Although my husband is great now, he wasn't in the beginning of my disablement. He had always seen me fight through fibro and lupus to live a normal life and I don't think he though it could ever get to the point where I couldn't do much.

It's hard to be rational and not panic when you are in so much pain as obviously you are based on your meds. More than likely they will not take your SSI away and when the forsm are all filled out your medical doctor should be adding the fibro to your disability.

I'm not sure where you live but many areas have programs to assist disabled people in the home. My Mom also has fibro and has lots of things she can't do. At times her situation has been as bad as yours at the moment. Me being sick doesn't allow me to be any help to her and my husband has to work to take of us and the family so there really is nobody to help her with life necessities.

Try contacting social services and asking about in home care programs. They clean my mother's house, do laundry, go to drug/grocery store, prepare meals, help her bathe when needed. Pretty much anything someone might need help with. And it was all covered under medicaid and medicare. It doesn't cost her anything.

I hope that helps, I know it improved her mental state quite a bit to not have to worry about the dished or laundry or other things she couldn't do.

I know it sounds lame but if you can try to listen to relaxing music and float out of your body for awhile when the pain is at it's worst that can help. Our bodies and minds have a natural ability to diassociate from pain. Just try to focus on the music or a pretty tree outside and tell the pain to go somewhere else for awhile.

Good luck and hang in there.

Old 07-02-2004, 05:28 PM   #3
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Join Date: Jul 2003
Location: Pa.U.S.A.
Posts: 988
pa235 HB Userpa235 HB Userpa235 HB Userpa235 HB Userpa235 HB User
Re: How can you live this way?

The only thing you can do is take day by day. I have a great supportive husband and that means a lot. I have FM, MPS for over twenty years but I have to say the first 12 were nothing compared to the last eight.

Is is sad that yo are alone, but we are all here for you. Make sure you have some medical proof of your pain also for your hearing, may make things easier for you.I wish you luck wth your hearing, and post anytime we are here.

Your new friend, Linda

Myofascal pain syndrome
Arthritis, cervical and thorastic

Old 07-02-2004, 06:14 PM   #4
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Join Date: Jul 2001
Location: Idaho
Posts: 295
la_brat HB User
Re: How can you live this way?

It is hard. We take it day by day with the hope that the cosmic forces will guide us to find something that will help. That day may to tomorrow.

For you in particular, it sound like you could use a social worker to guide to the help you need.

Old 07-04-2004, 12:40 PM   #5
Join Date: Jun 2004
Posts: 242
PapaRoux HB User
Re: How can you live this way?

Hi asfirelfly--

I was literally broke after a while between the Lyme Disease and Fibromyalgia.
Eventually I did go to a nursing home to 'check myself in'. I just didn't know how to handle anything anymore. My wife didn't know what to do either.
I had thousands in medical bills and my SSD review came up to furthe my anxiety.

Best bet: Rest. I know it's all I can do and sometimes I get so discouraged.
I can hardly walk this weekend.

The upshot of the whole thing was that I went on Welfare and they had to help me.

I relied on charity care---Medicare and SSD wasn't enough to cover all the bills.

So--there are services out there to help. It's just a matter of calling the township, county, state officials and get every benefit possible.

Right now I am financially stable, am back with my wife and the whole problem has been resolved. But--I had to go through it to survive.

And I did.


Old 07-05-2004, 01:02 PM   #6
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Join Date: Jun 2004
Posts: 16
asfirefly HB User
Re: How can you live this way?

hi ed.

what i am very curious about is the nursing home issue. can you please tell me about this. this is a very freightening notion for me as i am in my early thirties. what does this entail? i have found that most nursing homes that i have visited for the elderly are the most horrifying places on earth. the workers tend to be minimum wage workers with no real passion for providing loving caring quality care.

how did you go about finding one? what was your experience like? how did they treat you? how much did it cost? how long were you there? did you have a rehabilitation program? what did your day consist of? did you spend most of your time in bed? were you treated well? did you receive caring and compassionate care? i'm sorry for the barrage of questions. i am very very scared of this. but if i cant pay my rent and my ssi is discontinued, and even if it weren't i cannot imagine a place where i could live on my own and afford.

i am in a very scary crisis and no one in my family seems to realize the severity of the problem. i am paying thousands of dollars for medical care now and have applied for medicaid in ny where i used to live to cover a very expensive hospital stay recently. i pray each day that my life gets better and that i do not at the age of 33 have to go live in a nursing home. i would rather die than do that. any advice you could give me would be invaluable. i understand if you do not wish to divulge your personal experiences but i am not able to ask anyone else.

thank you ed and i pray for your health and happiness.
best, asfirefly

Old 07-05-2004, 02:07 PM   #7
Join Date: Jun 2004
Posts: 242
PapaRoux HB User
Re: How can you live this way?

Hi Asfirefly---

I'm sorry if I made it sound like I actually lived at the nursing home.
What I did was go to check myself in because at that point with the Lyme Disease/Fibromyalgia I was in diapers and using a walker and totally alone.

I got over there and told them I wanted to check in. They refused to take me and I guess my wife felt sorry for me at that point and began to see how sick I really was. The nursing home would have needed paperwork from the doctor and I didn't have it. And--the next thing they were going to try was an IV at home for one month. Needless to say I was at my wit's end, but the docs were still trying. I guess it wasn't my time to go to the nursing home.

Asfirefly--I'm sorry I made it sound as if I was admitted. My mistake in wording.

My guess is that a doctor would have to order the nursing home and every case is different. My mother-in-law just got checked into one and all the doctor had to do was to give the order.

I hope all works out well for you, too. I hope and pray also for your well-being in all things.

Think about this: when you make it through this you'll find that perseverance paid off and you made the right choices to ensure your security and health.
(Don't worry about SSI---odds have it that you'll be OK with that).


Old 07-05-2004, 04:00 PM   #8
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asfirefly HB User
Re: How can you live this way?


Thank you for your replies. It helps to write and actually have someone answer. You are very sincere in your responses and I appreciate that. I am scared but trying to hang in there. My new goal is to get better - to beat this because I cannot let myself end up disabled at 34. I am glad you are doing a bit better although I know you have your days.

I am lucky that my new dr is willing to write letters to ssi for me to tell them that I am still very depressed and now that I have fms am even more disabled. He is my savior. I don't know what I will do if that money is gone. It is very scary and keeps me up at night. I'm just a young lady who should be enjoying life but I am not.

Well, it is nice to hear from you and feel free to write to me at anytime if you are feeling down. I know you have difficult days as well and the pain is horrible. Have you tried the guai method? I have just started it. I am also taking fentanyl lozenges that help the pain and help me sleep. You may want to look into this.

Blessings to you and thank you so much,

Old 07-05-2004, 09:40 PM   #9
Join Date: May 2004
Location: Western Colorado
Posts: 457
taurus3 HB User
Re: How can you live this way?

Hi Asfirefly,

Sorry I didn't post earlier but I'm really sore today. I am only 35 and can't work right now either. Been that way for two years. I'm getting slowly better but it's going to be at least another year before I can even work part-time I'm pretty sure. Not being pesimistic just setting realistic goals based on results so far.

I wish I could say something that woudl be of help to you. I will keep you in my prayers that your family gets a clue and other help presents itself to you. I couldn't imagine having to go through the last two years by myself. ALthough my husband's job is in jeapordy right now so I'm feaking out since I'm seven months pregnant. I know he can find another job quickly but if we lose the insurance we will be in debt like crazy after the baby.

I know we can't help you with the practical things of life throught the internet but we will always be here to vent to and seek support from.

Your Friend in Fibro - Andy

Old 07-05-2004, 10:35 PM   #10
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Join Date: Jul 2004
Location: U.S.
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Izzybella HB User
Re: How can you live this way?


Last edited by Izzybella; 08-01-2007 at 08:56 PM.

Old 07-06-2004, 08:25 AM   #11
Join Date: Jun 2004
Posts: 242
PapaRoux HB User
Re: How can you live this way?

Hi Asfirefly--

I haven't tried the guai treatment--- basically---not to discourage you---I don't believe in it. My doctor is pretty much up on everything and I go over supplements and that kind of stuff and he'll let me know what he thinks.
I'm sure that if he thought it was a cure--he'd take charge of it. He's indicated to me that Fibromyagia is unreversable. I tend to believe him.

I hope you're having a good day today. I'm exhausted....coming off of the flare-up. I just called the doc and asked him to increase one of my meds.
He had cut me down on it when he prescribed something else, so I don't know what he'll say, but since I have so much trust in him---he's the boss.

I hope your days get better and better.


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