** I am new to board and very new to FM ***

Within a month been seen by 2 primary. Rheaumatologist and Endocrinologist
After Rheaumatologist said it was Fibromyalgia and I took a FM/a blood test that said 97% positive

I wrote in to my primary yesterday and asked if I can get a handicap placard ( because since August this has snow balled so quickly by afternoon my legs are very weak most days). Just to use on days that it’s to much. I typically use shopping carts to hang onto but finally broke down and bought a cane Incase I am not at a store with a cart or if I am already there and it sets in because to be honest if I am that bad I wouldn’t be out. Anyway I am so confused about FM and new and now I am embarrassed for asking for a handicap placard.

This was her reply ....
“Fibromyalgia is not a diagnosis appropriate for a handicap sticker, in fact increasing exercise will help treat the fibromyalgia and walking further from the parking spot will actually help the disease”

So how embarrassing I wasn’t trying to park closer for being lazy. In fact I will trade anything so I would park always the furthest spot away if I can get rid of what’s going on. Is this FM or do I have something else to. Seriously I am confused. It’s hard for me to look through so many stories on this forum and believe we all have issues because we are not walking farther and we all don’t exercise
 

Dooi

Moderator
Well I don't know if her advice was medically accurate. Depending on the level of Fibromyalgia pain that day, walking may not be possible due to pain and discomfort. It is well known that exercise can help, but there are limits due to pain some days.

I have known people that receive disability for Fibro, so why wouldn't a disability parking sticker be in order?

I think there's a lot of misinformation being given by this "doctor". You must be very frustrated.

This journey with fibromyalgia is plagued with misinformation, frustration, and general distrust, which we all usually aim at ourselves. No wonder people with fibromyalgia have higher incidents of depression.

So what did you do with that doctor in the end? :)
 
I asked for a referral to a neurologist to make some newer symptoms are not MS. Which she did give me. My appointment is Dec 18th. I think I will research see if I can find a physician who may also have Fibromyalgia. Or at least someone who understands better. I don’t believe the philosophy that walking further and exercising makes it better from what I have read from others that if that was the option to get rid of the pain etc we would all be tri athletes and in serious training. Im not saying not to exercise but when you are in pain there is no way I can hardly walk.
 

Dooi

Moderator
I don’t believe the philosophy that walking further and exercising makes it better from what I have read from others that if that was the option to get rid of the pain
I agree, it's not a "cure", just that it can help with overall discomfort. But again, that's the thing with fibromyalgia, it's different for different people.

What seems to be agreed is that trying to find things that work for you is the best solution.

What may work for me, may not work for you, and vice versa.

we would all be tri athletes and in serious training
Yes, when you say it like that, I think it drives home the point.
 

Firo30

New member
** I am new to board and very new to FM ***

Within a month been seen by 2 primary. Rheaumatologist and Endocrinologist
After Rheaumatologist said it was Fibromyalgia and I took a FM/a blood test that said 97% positive

I wrote in to my primary yesterday and asked if I can get a handicap placard ( because since August this has snow balled so quickly by afternoon my legs are very weak most days). Just to use on days that it’s to much. I typically use shopping carts to hang onto but finally broke down and bought a cane Incase I am not at a store with a cart or if I am already there and it sets in because to be honest if I am that bad I wouldn’t be out. Anyway I am so confused about FM and new and now I am embarrassed for asking for a handicap placard.

This was her reply ....
“Fibromyalgia is not a diagnosis appropriate for a handicap sticker, in fact increasing exercise will help treat the fibromyalgia and walking further from the parking spot will actually help the disease”

So how embarrassing I wasn’t trying to park closer for being lazy. In fact I will trade anything so I would park always the furthest spot away if I can get rid of what’s going on. Is this FM or do I have something else to. Seriously I am confused. It’s hard for me to look through so many stories on this forum and believe we all have issues because we are not walking farther and we all don’t exercise
Hi , I have Fibromyalgia too and you should not be embarrassed, as in your case my family doctor and Rheumatologist suggested also walking , swimming and to keep active but with moderation . As for the handicap placard, usually a physiotherapist or an Occupationnal therapist that should assess you for this card, because they observe you and assess you during walking , the family doctor does not do that and thus it is harder for him to trust that you need one
 

Dooi

Moderator
That's good advice @Firo30; I'm looking for an affordable physiotherapist and will inquire when I do find one. I'll let you know what I find out.
 

Momneedsanap

New member
I am new to fibro too but what is this blood test you are talking about????

I agree you should be able to get one if needed.
I’m slowly learning that moderate exercise helps me. I used to be really into lifting weights and now I’m learning to do 25 min plus tons of stretching.
I also do water aerobics, Pilates and walking (though I had a serious issue walking earlier this fall).
 

sunkacola

Senior member
Moderate exercise definitely helps, but it's not the right thing every day, or so I have found. The main problem I have is that I never really know what day it will help and what day it will end up making me so exhausted that the next day or even two or three I will be almost unable to do anything at all.

I am an active kind of person who has always done a lot of active things outdoors and lifted weights and worked out and so on, and not being able to do a lot of things that I used to do is very hard to accept. I have no choice but to accept it, of course, but that doesn't make it easy.

I keep thinking that I have found an exercise activity that I can do regularly, and I dive into it and am happy about it and then I crash and can't do it any more. It's frustrating.
 
Hi , I have Fibromyalgia too and you should not be embarrassed, as in your case my family doctor and Rheumatologist suggested also walking , swimming and to keep active but with moderation . As for the handicap placard, usually a physiotherapist or an Occupationnal therapist that should assess you for this card, because they observe you and assess you during walking , the family doctor does not do that and thus it is harder for him to trust that you need one
Thank you. I did go to Neurologist and already had my MRI and everything was normal. I am very happy I dont have MS. I thought for sure I did. Walking has gotten worse that I will not be embarrassed and use my cane I bought. Walking is difficult. Hope its what everyone calls a flare and this goes away soon. Thank you for the advice.
 
I am new to fibro too but what is this blood test you are talking about????

I agree you should be able to get one if needed.
I’m slowly learning that moderate exercise helps me. I used to be really into lifting weights and now I’m learning to do 25 min plus tons of stretching.
I also do water aerobics, Pilates and walking (though I had a serious issue walking earlier this fall).
I was searching all over about my symptoms and Fibromyalgia. I did see a rheumatologist and he diagnosed me with Fibromyalgia but a few days later my results came back it said 97% fibromyalgia. I am not an expert at all I am just desperate to figure out what is going on from spring time horrible fatigue then by August painful muscles no joints then by October add painful joints and very weak muscles and a few weeks later now its getting difficult to walk. And joints also hurt now. This was all so quick.

thank you
Kristin
 
Are you thinking of getting a third opinion?
I did go to Neurologist to check and make sure this isn’t MS and my MRI was normal. I think if my mobility gets any worse then what it is now I will go to Mayo and have them figure this out unless Fibromyalgia can cause a person to have very hard time to walk like you need a walker or somewhere to sit because you cant walk. I will see how this develops.
 

Firo30

New member
Thank you. I did go to Neurologist and already had my MRI and everything was normal. I am very happy I dont have MS. I thought for sure I did. Walking has gotten worse that I will not be embarrassed and use my cane I bought. Walking is difficult. Hope its what everyone calls a flare and this goes away soon. Thank you for the advice.
I am glad it is not MS , I struggle ever day to walk even for short distances so I understand you and understand your frustration with the system .
 

Firo30

New member
Moderate exercise definitely helps, but it's not the right thing every day, or so I have found. The main problem I have is that I never really know what day it will help and what day it will end up making me so exhausted that the next day or even two or three I will be almost unable to do anything at all.

I am an active kind of person who has always done a lot of active things outdoors and lifted weights and worked out and so on, and not being able to do a lot of things that I used to do is very hard to accept. I have no choice but to accept it, of course, but that doesn't make it easy.

I keep thinking that I have found an exercise activity that I can do regularly, and I dive into it and am happy about it and then I crash and can't do it any more. It's frustrating.
Hi I completely agree that everyday is different and you can not have an activity that would work well everyday , symptoms of pain and fatigue may vary daily and thus affecting your ability to do an activity with consistency!
 
I am glad it is not MS , I struggle ever day to walk even for short distances so I understand you and understand your frustration with the system .
I have an appointment with a Lyme specialist and got names of which physicians from the website Ilads I have appointment Feb 6. My daughter said when searching Lyme can mimic Fibromyalgia also. After tons of reading and talking thru IG with someone who had same symptoms and has Lyme. She explained to use only a Lyme specialist. So I will wait to see one. Seems like basic protocol is some ELISA test but it gives such high false negatives. I will find out more during my appointment. After reading sure sounds like anyone with Fibromyalgia should rule out Lyme and not just with ELISA test