Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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YoukaiShifter 02/01/2015

So.. I'm really just trying to figure out a better way for me to get around. Right now all I got is my cane. But it is hurting the hell out of me because I'm putting so much pressure on my wrists. Both of which have carpel tunnel. Before that I have a service dog which had a bridge handle and didn't twist my wrist or cause all that pressure. She needed to retire due to her own medical problems. I bought those grabbers to get things off the floor but they really can't pick up a lot. Most the times I need someone to go with me. Just the other day I was at JoAnns and literally dropped the products I was looking at like 10 times. I am in the works of training another service dog, but in the meantime I feel so limited. I DO NOT have a car. I have to WALK everywhere or take the bus. Some days I just want to take my dog to the park but fear I won't make the trek back if I went.

Back in June I asked my previous doctor about the possibility of a wheelchair. But only as-needed to better manage my fatigue. She basically told me that she didn't want to make me more disabled then I already am.

Ok, back to now. I've called medical transport like once to set up to see the doctor, but their phone personnel were so mean to me.. and I am afraid to ask for the transport again.. Instead I'm relying on my friends all the time to help support me when I need to get out. I need to get tested again in a lot of things cuz tbh I don't feel like I JUST have fibro, but in the meantime, is there a way to talk to a doctor about these issues and not seem like I'm just trying to get a free ride? To help them understand how hard it is for me? Should I wait it out before asking this new doctor? Do I really need the chair?

Other problems.. Lately have experienced new symptoms of motion sickness.. Especially in cars and buses. Ugh.. I was telling my therapist.. I just want to stay as independent as possible for as long as possible.. I'm getting tired of feeling sick all the time and not having the energy to go anywhere and when I do I'm forcing myself past my limits just to get home.. And constantly paying for it.

ItsJustMe2012 02/02/2015

You should be able to get a wheelchair and only use it when you need to. Although, you may need a battery operated wheelcjhair instead of a manual one because of your hands. Insuance companies can make getting a wheelchair a real pain. If you have Medicaid, they might have different requirements. If you need medical transportaion, call then back when you need to go some place, they have more than one operator on the phones. If you encounter someone who is rude again, male a complaint. If you receive Medicaid, you state has someone totally seperate from medical transportation that you can complain to.

ItsJustMe2012 02/02/2015

Wish there was an edit button. Some insurance companies and Medicaid offices require specific info on the rx for Durable Medical Equipment (DME), That info may need to be very detailed and some drs don't want to bother with it. It was always easier if I took in exactly what the dr needed to write on the rx already written out and then pick up the rx a few days later. Part of my job was helping ny clients get things like a wheelchair and other equipment they needed.

YoukaiShifter 02/02/2015

Thanks.. I will try to talk to him about it and call medical transport again later. I'm just worried that I will be blown off again because fibro is real good at masking itself and how terrible I really am doing. And my last doc didn't understand how taxing it really is to take public transit everywhere and walk.

ItsJustMe2012 02/04/2015

If you're not seeing a Rheumatologist, you may want to consider it. They often know more about fibro that other drs do.

PeaceN2You 02/05/2015

I have a small motorized scooter and it's been a lifesaver for me. My doctor prescribed it because I have so much hip pain and it's exacerbated by walking.

If I'm walking more than from the car to the door, I have my scooter with me. Not sure why your doc thinks having an assistive device will make you "more disabled." We are what we are - and assistive devices help us to function more normally.

Abotsd 02/05/2015

I find it hard to admit to myself how painful walking has become. I blame myself for gaining weight, but that is a side effect of Lyrica. And I am aging and getting more fatigued, even though I do get good sleep. Just got a new vpap and it's so little and pretty. I don't know how to pay for a scooter, but that's just what I need. Will discuss it with my drs.

Hoping you do good for yourself, no one else is as interested. Abby

YoukaiShifter 02/06/2015

I'm not on anything myself and was gaining a lot of weight too.. But I was also anemic recently. so Idk.. I think a lot of ppl trying to blame it on my weight.. even my family says "eat better" well I am. Reason I got sick recently I think was because I was so worried about vitamins that I made this shake in my blender with frozen berries and such. Right after I had it I got this sore throat and it just keeps dragging on and on! I can't loose weight because I don't have the energy I had before to exercise or be active. And my Service Dog got me out to do things like that. Right now I'm struggling to even handle going on a bus or in a car! I do still take my dog for walks every day though. And I need to see my doctor, a rhuemy, and prob a dentist. I have this massive jaw pain.. and I'm thinking it may be a tooth problem besides the possible TMJ.

kevinhaskins 06/04/2015

Yes you should get a wheelchair and only use when its indispensable. Wheel chair comes under the type of durable medical equipments which is generally prescribed by doctors to use in the home for living comfortably in some disability condition. Wheel chairs are of different types you can just order them from a supplier like http://www.ilexmedical.com/content.php?id=1001 and many others. It includes standard wheelchairs, transport wheelchairs, hybrid wheelchairs, and added-feature options that have cup holders, seat belts, removable arms, reclining backs and much more. You should choose a battery operated model with added feature options because of your hands.

ItsJustMe2012 06/04/2015

If you have Medicaid or Medicare you will need a rx for a wheelchair. You may or may have to get a manual wheelchair. It will depend on your state Medicaid rules and possibley what your Dr writes on the rx. You also need to call medical transport back.

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