New, Alone and Frustrated

I am a young woman recently diagnosed with Fibromyalgia. I made my first posting yesterday but hoping to get more advice by posting a new discussion.

I have been prescribed the Prednisone Medro pack off an on, but I usually have to shop to different doctors because they dont like to prescribe it long term. But Prednisone is the only medication that has worked for me, and once I finish the pack the pain always comes back. Has anyone else experienced this? Also, Im supposed to be starting Lyrica and wondering how others have felt on this medication.

Also wondered if there is anyone else who has experienced severe hardship due to this illness. I was evicted from my apartment and forced to leave my job and now facing homelessness. If anyone knows of any resources in the DC metro area or in the state of Maryland it would be greatly appreciated. Most people think all you have to do is show up at your local social services, but its more complicated than it seems. Because my income was above average before my illness, and because I am single with no children, I dont qualify for housing or financial assistance, only food stamps (which does help a little). Waiting on my application for Disability. Have begged my family for support or at least temporary shelter, but none willing to help. Wish I was lucky enough to have the family support that others seem to have on this site.

My only wish for Christmas is to have a permanent place to live, because knowing I wont be on the streets would be such a relief and allow me to focus on getting well. I know I will only get worse if I have to go to one of those shelters where you only get a bed and have to be out in the morning. I barely have the energy to get out of my own bed than to worry about having the energy to roam the streets during the day. Hoping to connect with a church that might be able to trade my labor for a room.

Anyway, thanks for listening and letting me vent. Any resources, advice or help would be great.

Dani

You just came up in my email with the fibromialgia link I hope you are not spam but I will tell you one thing living with Fibromyalgia scoliosis and anemia all you can do is keep moving and don’t give up homelessness scares even me to this day because of the way the world is going if it’s better fits you to live on disability and help from the state if you’re going to make more than you would working then go for it!!! but if you’re going to make more working and keep your mobility then go for it!!!


Hi The moderators will broadcast discussions with a link to all the members at times. It should come across with the fibro site on it.

I'm sorry this is happening to you, Dani. I don't know of any local resources because I'm not in your area, but I can tell you a good friend of mine recently was in a situation of being homeless due to disability and is finally in a transitional housing situation right now. I really really hope you find something. I'm sure you're already scouring all the info you can, so maybe none of this will help you, but some ideas: getting a dedicated social worker can help a lot and there are different ways of getting one assigned to you - some of those temporary shelters have them so stopping in to talk to someone there might at least give you some leads?? There's also calling 211, which gets you your local chapter of The United Way and they might have some ideas, resources, etc. as well. I know where I live there is a homeless day center for people who have no where to go during the day and they have computers and various resources there.

I'm sorry I can't be more concretely helpful, but I want you to know that I am thinking about you and sending well wishes your way.

Hi Dani

I don't know any thing about the area you live in but I know some churches have places you can stay that will help you find a place explain about your illness and they may work it out so you won't have to leave during the day. Also talk to the Red Cross in your area.

I'm so sorry that this has happened to you. I didn't think in this day and age that people were getting fired because of an illness or disability. Is FM the reason you were fired... Using too many sick days? You can try contacting national fibromyalgia association on their website, just google it, see if they know of any resource's in your area.

I am sorry that you are having to do this alone. I don't know anything about obtaining resources but I am very familiar with prednisone.

I besides fibro I am a life long asthmatic. I know from experience prednisone can make you feel like Wonder Women. However the doctors are right to feel Leary about prescribing it long term. It can cause side effects that are sometimes worse than the original symptoms you are treating. Personally I would rather suffer from some pain than take the prednisone. If you can get some relief form the lyrica than I would go that route. I would also suggest that you keep your self moving even if it is only a 15 minute walk around the block. It seems that doctors do have this part right. If you don't use it you will lose it.

Good luck and keep fighting to be herd.

Hi Dani - your message just showed up on my computer. I am 72 and have had fibro for 35 years, long before anyone had really heard of it. it is made worse by anxiety, fear, etc. the only medicine that has helped me is cortisone, which is what you are taking. I have taken it by injection every three months for 5 years and now have osteoporosis. I knew that was a risk. I went to a woman rheumatologist who insisted cortisone would not help, so I talked with my general practicioner he told me the help and the risks and I chose to take the risk. it saved my live and job for many years He tried Lyrica for me, but I gained 19 pounds in 10 days and quit. I have a friend that takes lyrica and it helps her. I retired a year ago. I don't remember what it feels like to feel good and normal. I will pray for you. I don't know how else to help you.

I applied for disability and got it within three weeks. I live in Nebraska and was told that a diagnosis of fibromyalgia is a definite disability and you do not have to wait. look in your phone book for a state Ombudsman. call and ask for help.

I will be praying for you carolyn

Hi Dani,

I will remember you in my prayers that you are able to find housing!!!! I was unable to keep working this year as my symptoms got so bad. I've been on Cymbalta for 7 years. Lyrica didn't work as it made me very hyper and "crazy" feeling. Never heard of using prednisone. Am in the long, horrendous process of getting SS Disability. Have had to get a lawyer involved. People don't understand fibromyalgia. They think you're making it up, you're lazy, etc. I had to go from making $60,000/yr. to now living on $1900/month for disability retirement and short term disability. Sounds like a lot, but just my mortgage was $1200/ month. I was in foreclosure, but was blessed enough to find a program to help me keep my home (at least for now). It has devastated me financially. We need to do something about the SS Disability system so it doesn't take YEARS for someone to get the help they need. I just found out I have some issues with my heart as well. Thinking I hope something doesn't happen to me before I get approved for SS Disability benefits. I pay $790/month for my health insurance, too. Anyway, you are not alone!!! I know how it feels to think about giving up. Like there's no hope. Like no one understands. I can't help as I don't know the area you live in, but try finding a church. I'm a Christian and would hope they wouldn't turn their backs on you. Take care of yourself as best you can.

Hi

I'm very sorry to hear you're having such a hard time.

Maybe Catholic Charities can help if they're in your area.

They've helped me before (for a different situation) and I'm not a Catholic.

As for the prednisone it's the only thing that's ever helped and I have the same thing with drs being so reluctant to prescribe it. I'm told its because the side effects can be very bad. Well living in constant pain and overwhelming exhaustion is pretty bad as well. As for all the old standards (Lyrica, Cymbalta, etc.) they were useless and made me feel like a zombie. And I've always given the medicine ample time to work, at least 3 months. Hopefully the Lyrica will work for you. For now it's ibuprofen and naproxen. Just saw a new rheumatologist this past week hoping for a new game plan. Please keep us updated so we know you're okay. Hang in there. :)

I do receive disability (SSI) it took about 2 years. It is a ridiculous time frame.

One church that will help a lot is the LDS church. I am from Utah, but I am not LDS/Mormon and I had to finally go to the Bishop of the church after quitting my job because of my health declining my. They have helped, even though I am not a member, with my rent and utilities. Just a possible option, I’m not sure how hard it is to find an LDS church out of Utah though. I have had almost all of the fibromyalgia symptoms for 10 years now and the doctor has just finally did a diagnosis of fibromyalgia along with Bipolar II disorder after all these years of being on the wrong medication. I take methadone for my degenerative disc disease and it does help with a lot of my back pain and is an inexpensive medication, but is highly addictive and you have to be okay pretty much with being on it the rest of you life. I would also be interested in others opinions of medications that work for other fibromyalgia pain.

Dani,
I am so sorry you are facing the added anxiety of financial instability along with fibromyalgia. I have not taken prednisone. I take Tramadol as needed, and take Flexeril at night which really helps me rest well most nights. Because of my bipolar illness, I can’t take some of the common meds (Lyrica, Cymbalta, etc.).

I would recommend Catholic Charities, as several friends in my local support group have been helped with everything from rent assistance to a ride to work. Most are not Catholic.

I wish you all the best and hope you will continue to reach out. From my experience, staying connected is vital for managing chronic pain, which is not only debilitating but can also be isolating. Please keep us posted.

Hi Dani,
My sympathies go out to you, I hope you will find some peace w a church,have you by any chance called United Way at 211. They are pretty good about resources you might could use. Also Craigslist in your city or town might have a live in position in exchange for sitting w/ their loved ones. I wish you the best of luck with everything. And God Bless You

Hi. I have Fibro and had low vitamin D levels. I now take a big Rx dose of vitamin D3. It is at a good level. I took a short course of oral prednisone and almost felt like I did before Fibro. I also got an injection of a steroid named Kenalog which helped for about a month…though not as well. The second injection 3 months later did not help markedly. I decided to discontinue, as it messed with my hormones too much. I recently had all my annual labs done and finally a doc thought to check my adrenal function through a cortisol and DHEA (metabolic labs) test due to my fatigue and morning fogginess. I found out I am low on cortisol and DHEA. So interesting that the treatment is with a corticosteroid (low dose daily). I see an endocrinologist this Monday for more testing/treatment. I am hoping that I will feel a little better when this is rectified. I take a quality B complex too. Magnesium aspertate 4-600 mg a day which helps decrease muscle spasms. I use advil or aspirin some. I got a little relief with Cymbalta 60 mgs but had to discontinue due to it raising my liver enzymes too much. I do take Gabapentin 600 mgs each night which helps with sleep quality. It is like Lyrica. I have not noticed any side effects. I try to walk 3-5 times a week for 20-35 minutes now. I have gotten better at pacing myself too. I am married with 2 kids at home ages 18 and 7. My husband has been very supportive and understanding. I am a 5 year ovarian cancer survivor too. I am most likely cured (yeah!). I am thankful for my friends and family. Best wishes to you. It is a journey.

I am sure your location in itself is a very hard place to find help. I have suffered with Fibro since 2006, following a heart attack. I fought to continue living a normal life until March of 2012 when my doctor told me we were not doing things my way anymore; we were doing them hers. I was supposed to be out of work for 3 months while doctors worked at getting my meds straight. Three months has turned into 3 years. First, in the area I live in, the first thing to do obviously is find a place to live. The only way I know of getting help is through churches and the United Way. If you have filed for SS disability and you were denied your first time, you must appeal as quickly as possible. Most that file for disability, whether it is for fibro or something else doesn't matter; you will be turned down. As I filed my second time around, I learned a few things: One, a diagnosis of Fibromyalgia will not get you disability as we have been led to believe. The key word seems to be "Chronic Pain". The most important diagnosis you need is "depressed". That one word will get you approved 99% of the time. With depression most suffer from anxiety as well and between the two, you are affected with short term memory. They will ask you to come in and test your memory and honestly, I could not remember the things they asked me to remember. I was so afraid of being turned down a second time because if you are, you MUST seek a lawyer if you don't have one yet and it will be somewhere around 2 years before you come before the Administrative Law Judge. A lady in a small store heard me talking to the owner about my sickness and advised me to contact one of the Senators in our State by mail and explain everything in that letter: suffering from fibro, depression, anxiety and any other sicknesses you may have and how they are and have affected your life. So, although I had a lawyer, I figured I would end up waiting 2 years after my appeal, so what did I have to lose. Within two weeks I had my disability. Any steroid, will harm you more than help you and as for Lyrica, I myself, could not take it. I was put on Cymbalta next, which after 2 years or so, I finally started having reactions to and was taken off of it as well. You will notice that living with fibro, it somehow affects your immune system and many medications you were never allergic to before you now have reactions to so you must be careful and watch for reactions to the many meds they will try. I wish I knew of other places you could get help with finding shelter. I do not live in your area and even if we did live in the same place, it seems there are limited resources to help with that. Fibromyalgia is hard enough to live with without having other problems/sicknesses to contend with. My sister recently read an article to me that researchers now believe that Fibromyalgia has something to do with the neotransmitter in the brain that controls the nerves, which in turn controls the pain in the body. It does not function properly and in turn causes the severe pain we all feel in our bodies everyday of our lives.Of course, like everything else, there is no proof, but if this is true it could be a step in the right direction in finding a possible cure for all of us. I don't understand why your family will not help. Nothing burns me more than family that cannot help another family member who is down on their luck and sick. They must be heartless people, I am sorry to say. If you lived in our area, I could have you a place to go in a heartbeat. And as for churches, they aren't much of a church if they won't help people. God will be taking care of all of them when the time comes. In a country that is supposedly as rich as our, there should NEVER be people who are homeless, hungry, or turned away for medical care of any kind. It makes me sick. Do you have any friends that would be willing to put you up? I know true friends are hard to come by as well. Most of who we know are only aquaintences but hopefully you have a true friend willing to help. Of course you could always try the White House. I am sure they would help you. LOL I'm sorry, but I just couldn't help myself. I will be praying for you. I hope the bit of help I provided will possibly get you disability sooner anyway and then you at least could maybe get some shelter. Good luck. I will be praying for you everyday. Please let us all know how you are doing.

Hi New, Alone and Frustrated! Do you have a Primary Care Physician who follows you in addition to seeing your Rheumatologist?. I think the first thing we need to focus on is housing for you. I not sure where you live, but have you tried calling Adult Protective Services just contact them and explain your situation and I've had success with a woman who's family kept kicking her out of the house. They can help you figure out what step to take next.. I think you may also want to contact the (ADA) Americans with Disabilities Act. The reason is they can tell you what your rights are and what reasonable accommodations would mean for your circumstances. I'm not sure if (TANF) Temporary Assistance for Needy Families would be something that your eligible for, but I would suggest you contact the Income Support Division in your area. I don't know what their guidelines are in regards to what constitutes a family. It may take some time but I would also suggest contact (HUD) The Housing and Urban Development Department. You could apply for Public Housing and also file for Section 8 Housing. I would check with the shelters in your are too! I know that you want more that a bed but a lot of times they will have Case Managers that will help you navigate the system. That's why I asked about the PCP because if they have documentation from your doctor's it would be in your best interest to have that information available. The other thing is that you want to be fired from your job so that you can collect unemployment. I use to work in Human Resources too and if you quit you can't get unemployment. Or the other option is to go to the Human Resources employee disability counselor and ask about taking a short term disability leave of absence. Do not go to your boss but to I don't know what you call it out there but I say disability counselor and let them know what's going on. What ever they do don't quit! I know it's over whelming but you do have a disability and that's why I wanted you to contact the ADA because they will tell you want an employer can and cannot due by law. Just to let you know I'm not making this up. I was employed by Harvard University and I went through the same thing you're going through but opted to go on short term disability and then onto long term disability. Plus I'm a Social Work student and we learn about what agencies would be able to help you, and I've also been doing advocacy work all of my life, which is my passion. I'm going to try and send you a message because I really want to talk to you about your situation. But I'm not comfortable leaving my phone number on this post. I wish you luck and will be praying for you. Do have any friends that you could stay with temporarily or are you connect with a Church, Mosque, or Synagogue? Because if they're true to their teachings they could also help you find housing through members or people that they know

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I am in the same boat but I have had this for 20 years. No family help. Got Disability but still somehow almost always facing homeless situation. Family has money but won't help. I don't know what to tell you except keep trying. Something will work out somehow. Where there is a will there is a way. God Bless You and take care.

Hello. I am on Lyrica but also need to take Endep. Endep is for nerve pain and helps with sleep at night. I'm so sorry for your circumstances and wish I could help. I live in Australia but one thing I can say is don't give up. I live remote and don't have any family to help me out if only to talk. I have a little dog which helps me to take my mind off all the nasties.

Just remember to keep moving as this helps with the pain no end. I am also waiting for disability but is very different to other countries.

I wish you all the best, have a Merry Christmas and staying positive will see the New Year happier.

Hi Danni
So sorryto hear you are in this predicament. I am sure achurch will be able to hep you find a place to call home while you are getting back on your feet. Fibroyalgia is certainly a big challenge until you learn to manage it. It needs a lot of patience and learning how to manage it. I wish you peace and an improvement in your pain and somewere to live. Lots of loveand pain free days and soft hugs Mary