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Tired of suffering

Hi I'm new 2 this, but I've lived in bed 9 years barly able to go out to any drs. I have myalgic encephalomylitis , CFIDS , fibro, chronic myofacial pain syndrome , cervical neuritis , sinal spondylitis , the list goes on . The first disease is deadly and done affected my heart . I can't get the help I need for treatment in my state, plus I'm not rich to get treatment elsewhere. I don't get enough pain meds to control my pain over the laws of the DEA. Does anyone know of even like E consultation drs that will help with my pain by talking to me online ect, and send meds to help me . I'm at Witts end suffering and living liike this. And are t able to keep even get out anymore. I can't evn take care of myself at all. I'm disabled and my life for 9 years is in bed. I've had a light stroke already , my heart is enlaged , blood clots. It affects everything in your body till u die. I'm in the end stages right now. And can't evn get a dr to treat my condtion with immune meds, iv Thearpy . Nothing . I did hear of a dr in Fl that used to do e consults but can't find out where he is at all . Thank u


  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 09/03/2014 - 12:08 PM
    I'm so terribly sorry that you are suffering with ME. My brother suffered for years. The only thing worse than the disease is the lack of understanding & research in the medical community. Have you looked at the "The National Alliance for Myalgic Encephalomyelitis" site? It could contain some important information for you.

    Are you currently receiving full disability benefits? If not look into that with the organization I mentioned above. They have information to assist you in getting what you deserve & need. There are lawyers who will not require any money upfront to take your case.

    Which state are you in? Have you checked to see if there are any research specialists or advocacy organizations in your area? I don't know if the research groups can be of assistance remotely, it's worth contacting them. I'd write to the 'Alliance' & see if they can advise you.

    I know it's a terrifying diagnosis & by its very nature it makes it so hard to advocate for yourself. I hope you can find a group in your state to help. ME was offensively called "Yuppy Flu" when it first hit the press in England. To date male pattern baldness still receives far more government funding in most countries!!! It makes me so angry. The little research that is being done is making huge strides in treating not only the symptoms but the cause of ME. Please don't loose heart, new developments are happening all the time!
    Osteoarthritis & DDD.
  • Unfortunately, the days of online consultations are long gone. You need to be seen in real life, by doctors on a regular basis. Most communities have some social services supports in place for those living with chronic conditions, including paratransit, which is available for anyone who needs transportation to medical appointments, shopping, etc.
    Contact your social services office for the county you live in, also adult services for the disabled in your county, also has resources available to get you to medical appointments.
  • LindasworldLLindasworld Posts: 5
    edited 09/07/2014 - 5:16 AM
    First, I am so sorry that you suffer as you do. How lonely and frustrating.

    Before I was disabled I was a visiting nurse. I don't know what state you live in, but Medicare does allow for in home help for those who are home bound, have you had a nurse come in to do an assessment? They may be able to hook you up with services to help. Sometimes it is easier to get a nurse to come in and refer for services than to go through the bogged down social service departments.

    I am hoping you have MCR and disability payments after so many years illness?

    Another option ( hesitate to write this one) would be to request a hospice nurse assessment. There are many types of hospice care out there, you mentioned the disease is "deadly", some of the agencies do not require the "less than so long to live" part, but rather go by your state of health and diagnosis, you said you are in the end stage. There are doctors that do make house calls in some cases with some hospice agencies. I hate to bring up hospice because of the sound of it, but the thing is, they know pain and pain management and even if they decide you don't qualify for their services they know of so many resources that others are not aware of. Just a thought.

    If you don't have the care in place already I would strongly urge you to call and get someone in to see you! Once the doctor has done an initial assessment the nurses can actually be his/her eyes and ears in the home.

    Do you have family support?


  • Those are excellent suggestions........thank you for your help.
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