Hi Dani,
I’m so sorry you’re going thru all this. Im 30 now, dxd at 23, so I understand how devastating it can be. I was a F/T college student and had to quit due to the pain. I didn’t have enough work credits to qualify for SSDI, but I was able to get SSI. It’s not as much, but it gives me food stamps, insurance and I’m able to rent a room in my family’s home and keep myself afloat. But if I couldnt afford or find housing, Id be eligible for housing assistance in my state (NY) and I think most states offer some form of it. I’m also single w no children. It’s worth a shot to get more info from your local SS agency to see what you’re eligible for. I would also explain the urgency of your situation and ask if they offer any type of emergency assistance you can get in the meantime.
As far as meds - prednisone, I’ve never taken it, but I know long term use can have serious risks so look into that. I have tried lyrica, but couldn’t tolerate the side effects (intense itching, tingling.) But it affects everyone differently. I’m now on gabapentin, a muscle relaxer and pain meds. They help some, but I cant work or go back to school at this time, which is frustrating so I’m still looking for a better treatment. I sincerely wish you some relief for your living situation and your health, you deserve it. Don’t give up, reach out to as many resources as possible and something will come thru for you!
I know the trouble and then some looking for what you can do and places that have dvr could help with that. As a guy who was diagnosed at 30 but have been suffering the pain since I was seventeen without knowing what I was suffering from
Sorry to hear of your troubles friend. I take prednisone too, it's legal over the counter here in Puerto Rico so I adjust the dose myself. It does have long term serious side effects but right now I'm just interested in being out of pain Look into your local states offices for emergency help. Try to get SSD or SSI. It's a pain and they mae you jump thru a lot of hoops but is worth it in the end. Best of luck to you!!! Sheila
I have had fibro for over 35 years. the ONLY medication that has helped in cortisone... pills and/or injections. I am allergic to Neurontin and lyrica I gained 19 pounds in 10 days things like Tylenol and motrin don't help. the cortisone has finally caused osteoporosis, which was a risk I was willing to take. I applied for disability 10 years ago and received total disability in one month. I live in Nebraska and I think states each have their own guidelines. now I take codeine (Norco) it is the only thing that relieves my pain. I do not sleep well at night, but I try to keep going. I don't turn the TV on til 7 at night.
I remain very discouraged. My symptoms are making it nearly impossible to be comfortable or maintain any dignity at work. My symptoms force me to order unhealthy takeout because I don't have the energy to go out grocery shopping. I had to tell my family that I couldn't go with them to church for Easter tomorrow because I knew my symptoms wouldn't allow me to sit through a church service. I have no help and I feel my body falling apart. I know something is wrong, but I have no insurance or money to go and see a doctor. The thoughts keep running through my head that I need to be in a hospital but I feel like maybe I'm not meant to live long. Doctors won't prescribe the only medicine that works, prednisone, so I'm left to suffer. Well, I don't want to suffer anymore.
Dani, it is important to take these feelings seriously. If your pain management is so poor that it is causing you to want to die, then you need to force someone to treat you properly. You should not have to give up on life because of these symptoms. If you are feeling suicidal, please do talk to a doctor or therapist. Your life is worth more than this. I am so sorry you are going through this.
Dani, WE need you... we all need each other to talk to and figure things out. What state do you live in... perhaps I can do some research on a place you can see a doctor for free or little charge.
Hi Dani I am sorry you are having such a difficult time. It is important to take care of yourself and there are options out there. Not sure if you are in the United States but there are urgent care centers that charge on a sliding fee. Have you tried applying for assistance for medical insurance? One really important thing I have learned over the years is to keep trying different things to see what helps with pain management. I also want to make sure you have the crisis line number, 1800-273-TALK. There are friendly helpful people available to talk and offer support. Please keep us updated on how you are doing. I am sending you HUGS.
Unfortunately, there is no help where I am. I've already called all the hotline numbers and visited all the social services offices but can't seem to get any help. No one cares that I'm sick because I don't look like the sick they're used to. I will probably end up back in the homeless shelter or on the streets. I know my body won't be able to hold out much longer, and I'm going to keep pushing until it does because when I end up dead then maybe someone will finally believe me and react more quickly to help other people like me. Sorry for the harsh words, but death is better than my reality right now.
Danni
I too have been at rock bottom like yourself and when I get like this I keep trying to get help and health centres. I am from Australia so I am not up with the American health system. We have all types of help available but I found with FM there seems to be a lot of ignorance about it. I feel for you and am sorry you are not able to depend on your family for short-term help. Please keep communicating with us as like-minded allies and I wish you all the best in your quest. Love and hugs Mary M (Australia)
I'm so sorry it feels like no one cares - that can be very difficult. It really does suck that it's so hard to get help for chronic health issues in this country, and that we don't have more levels and layers of support for people in need. Please remember that we care, we believe you, and we're holding you in our thoughts and prayers.
You are in my thoughts and prayers and are also not alone! This support group can help you see through the down times. You said you would have access to Agencies or help in DC or Maryland. I will do some research for you to find low cost or free help. I know that the nights can be difficult. I've had fibromyalgia sense 1985 and woke up one morning and couldn't get out of bed because I physically could not move. It took until 1987 for me to get a proper diagnosis and I traveled from state to state to try and get help. I finally found a doctor who suffered from fibromyalgia and also treated people who suffered from it too. I know it is easy for me to say keep the faith but in a lot of ways it does get better! Listen to the signals that your body is giving you and please take yourself seriously when you feel like giving up. We are here for you day and night. You're going to make it through this! I will do the research tomorrow and let you know what I come up with. Hang in there kiddo!
Dani, you’ve received some very caring support here. What is striking to me is that you have said steroids have helped you. They are anti inflammatories that slow down immune system response. Fibro is not currently believed to be an inflammation causing illness and steroids are not known to help Fibro pain. Please consider reaching out to crisis counseling until you get someone to listen to you. You seem very depressed and I know it’s difficult, but you’re worth it. I believe you may likely need to be reevaluated by a doctor that specializes in treating Fibro such as a rheumatologist as they need to rule out other illnesses especially given your particular response to steroids. There are autoimmune diseases that mimic Fibro such as Lupus that respond to steroid treatment that may bear investigating to name a few. Please keep us updated.
Hi - I have had fibro for 35 years. Cortisone is the ONLY medicine that has helped me. My doctor years ago AND my more recent doctor have told me I need to weigh the risks of cortisone against the quality of my life. I used to take a burst of pills, but the past six years have had kenalog shots every 3 months. There have been many blood tests and other tests to rule out lupus thyroid, all kinds of diseases. I do not HAVE any other diseases or problems. I have fibro and receive disability because of it. I did see a female rheumatologist a few years ago who insisted cortisone could not help me. I was taken off of it and tried on lyrica, neuerontin, even plaquenil -- I regressed into unbelievable pain. I do now have some osteoporosis, but am back on cortisone so I don't have to live the life of an invalid. remember that our bodies are different and a medicine that helps one does not help another.
I appreciate all the comments. But, I was turned away by my homeless case manager today, and made to feel horrible for asking for help. I was told I'm not needy enough to be worthy of their help. When you ask for help aren't you supposed to get help? I guess there's really no help for me. I'm so tired of suffering. What can I do to get people's attention?
Hi Dani, so sorry that you've had another disappointing day trying to find help.
Have you tried The Department of Human Services which through their 211 Answers, Please! program links District residents with essential human needs for food, shelter, financial assistance, and healthcare. You can access information 24-hours a day, seven days a week by dialing their 211 Answers, Please! call center at (202) ■■■■■■■■.
Hi Dani, Everyone here has given you great advice and I sincerely hope you follow up on the latest suggestions. Please remember this is a support group of folks with FMS. Moderators are volunteers who also have FMS. We all do our best to offer support, feedback, suggestions, however, we are not professionals. Please reach out the professional sources provided for you. Please feel free to email any of the moderators as well and we will continue to try to help. For now, replies to this discussion are closed.