how do i survive FIBROMYALGIA???

Question

how do i make my family and friends understand that what i am feeling is happening and i am not making it up to get attention every day is a fight

Answer 1

You learn to manage as best as you can, by using support from your doctor, family, friends and work place boss/colleagues, if your lucky enough to have their support and understanding.

Attend a Pain Management clinic, or see a physiotherapist, and a occupational therapist, if your able to afford to see them.

Also a support group can be of some assistance, and you will find some solace in meeting with others who have similar problems and issues. I have made a few NEW friends through support groups.

Also a healthy diet, avoid alcohol and stress (yeah right like you can avoid stress), a little exercise, such as walking, swimming, or a specially designed exercise plan set out for you, by the physiotherapist.

As for family, friends and boss/colleagues who have trouble understanding this crap condition, then feed them heaps of information, about Fibromyagia. (information overload) Those who really care about you, will read or listen to the information you give them.

The biggest thing I learnt was to be seen trying to be active in managing Fibromyalgia, by doing the above. Yes I have lost a few friends, but that is their loss not mine.

Most of the REAL friends have seen me at my worst, and become very caring, and strangely very protective. My hubby and daughter being at the top of the list.

I am lucky enough to work part time as a carer/Youth worker and teacher of 1st Aid, I work the hours I can, and if unwell then I don't work and my work places mostly accept this. I told them when interviewed I had a medical condition, which can impact on my work hours. I would also offer them information about CFS and Fibromyalgia, at the interview.

I Currently work between 3 -18 per week, dependent on my health.

I have included some links for you to check out, please take care of yourself, and your welcome to email for email support if you like.

Answer 2

Join the club: I sympathise and the bad news is that they will never completely understand. We are not very well supported by doctors, so how can we expect our families and friends to believe in the effects that this disease can have, particularly as the symptoms shift and change from one part of the body to the other and are better some days and worse on others.
Perhaps getting people to read a book on the subject or a magazine from the Fibromyalgia Association would bring the facts home to them.

Did you know that there is a forum for sufferers? I'm sorry I don't have the specific address, but just put Fibromyalgia Association into Google and you will find several references.

Above all, don't lose heart, there is research going on and when they find out more, the publicity will shine its light on our problems. You are not alone -keep smiling!

P.S. If you have trouble sleeping, there is usually someone in the forum who is awake too and with whom you can swap problems.

Answer 3

You can survive and live with FM. Learning how to manage your condition is a must! Your first step would be to get a proper diagnosis (if you haven't already). Make sure FM is what you have. Take a family member (or friend) with you to all appointments, never go alone. This is not to show them it's real, but to give you support and maybe ask questions you may not think of. Research your condition and work with your doctor to find something that will help reduce the pain and bring you to a manageable level. Learning to live with FM is not easy, but it is possible. Finding a good FM doctor is worth the effort. Some websites that may be helpful....

http://www.fmaware.org/index.html

this next website shows a letter you can send to family & friends....

http://members.fortunecity.com/webbsweb/fibromyalgia/fibromyalgia_008.htm

Answer 4

Is there a reason you're choosing to associate with people who aren't supportive? If you're a minor, I understand that can be unavoidable - if you aren't, though, don't allow those people to be part of your life!

Seriously - anybody who "doesn't believe in fibromyalgia" needs to be told that no matter how hard we who have it try "not believing" in jerks, they continue to exist. This isn't a matter of "belief." It is a real neurological disorder, with serious, debilitating symptoms that will get worse if not treated properly.

Try educating these people - but if they refuse to change, they don't deserve your energy!

Answer 5

My FMS greatly affects my marriage quite a bit. There's a website that I found that have "letters to normals" It greatly touched me. It is ran by a guy from Ontario that has it. www.fibrohugs.com. Take a look at it...By the way I'm 27 y/o and have had the dx for 2 yrs.

Answer 6

i have a friend with the same thing! i no how hard it is for people to understand what is happening to you! the best way to make them understand is to educate them? try downloading a fact sheet and giving it to them to read! if they are your friends then they will read it and take time out to understand! i did this for my friend! every day is a fight but it is a silent fight that can go unnoticed! don't suffer in silence mate but PLEASE don't give up! fight back! good luck mate my heart goes out to you!***

Answer 7

Poor you, I've heard it is pretty bad. If you have had a proper diagnosis from your doctor, look up the internet and show your family the facts - they really need to be educated about it.

Answer 8

I can totally relate... I have Fibro and MS ..Hold your ground be honest about the way you are feeling, but try not to let Fibro rule you
exercise, good diet and healthy vitamins are a good idea...Eventually they catch your drift and leave you alone more!

Answer 9

Take at least one of them to the doctor with you so that he or she can explain things. Give them literature to read in hopes that at least one of them will believe and understand you. Join a support group...

Answer 10

apply for all credit cards you can get bash em to the limit, cause you no you aint gonna have to pay em back