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A MyFibroTeam Member asked a question 💭
Dallas, TX

In the future what are some things (tangible on intangible) that you would like to be readily
available to you (as someone who suffers with a chronic illness).

What would be beneficial to you on a day to day basis?

What is the one thing that gets you through that you don’t feel you have enough of?

As I have said before I am working on advocating for us all... in ways that I can not yet disclose. But if you would please help me by answering you would be doing me a huge favor to help fight for… read more

September 28, 2017
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Answer Summary

Members shared what services would most improve daily life with chronic illness, with the most passionate calls being for affordable or free... Read more

Members shared what services would most improve daily life with chronic illness, with the most passionate calls being for affordable or free medical supplies (especially insulin and needles), coverage for alternative therapies like massage and acupuncture, and financial help with basic household tasks like cleaning. Several members highlighted the need for better access to care in rural areas through telemedicine, mobile pain clinics, group support meetings, and pro bono legal assistance navigating disability claims without exploitation. A recurring theme was the profound impact of social isolation and the desire for volunteer programs that provide both practical help and human connection, with one member envisioning a structured volunteer matching system through schools, churches, and community groups to combat loneliness and support independence.

A MyFibroTeam Member

All of the alternative medications such as vitamins, minerals, massage, holistic drs, etc. should be covered by our insurance. The cost is less than standard prescriptions and the benefits far outweigh them.

September 29, 2017
A MyFibroTeam Member

I would like more pain clinics available for those of us with fibromyalgia. Now that I live in a rural area, I see what a need a different model for a pain clinic needs to be so that more people are able to access one. Perhaps there could be ways to access regular appointments on the computer using Skype, or there could be more community nursing and people meeting in groups at a local church or community center. I think doctors should be willing to move about more in rural areas, but they don't where I live. They stick to their offices and you have to go to them.
There should be more pro bono lawyers to help people with chronic conditions get on disability. I'll always be grateful for the one I had. A lot of lawyers will take a chunk of a reimbursement check or some other payment if they win disability for a client. Believe me, disability doesn't pay anyone very much money. A person is still under the federal poverty level. I personally see lawyers taking money to get clients disability as exploitation. Let them go chase ambulances. Even that's more honorable, but I understand that many people trying to get disability are desperate, so they'll try anything. Advocating for a change would be a very good thing.

September 29, 2017
A MyFibroTeam Member

Free insulin with needles they give adducts free needles why can't those of us who need insulin to live get the needles free and insulin we didn't choose for our bodies to attack the bets cells that help in production of insulin.

September 28, 2017
A MyFibroTeam Member

Tele-Medicine! I have both Chronic Fatigue and Fibro and there are so many things I would seek treatment for if I didn't have to leave the house 100% of the time to do that. Specifically talk therapy! I know there are some things where you need to see me. But if I could talk to a psycologist or do a 2 week follow-up or routine refills without physically going into an office that would be huge.

September 30, 2017
A MyFibroTeam Member

Help with some chores. Finding a different way to be more independent.

September 29, 2017

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