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family members understanding fibromyalgia
12 Replies
mmkmmk_1@yahoo - November 12

is there a printout i could give family members to understand fibromyalgia

 

Shane - January 7

You could print out pages on the website to help the family understand fibromyalgia

 

Jan - April 18

Just do an online search, there is tons of info out there.
Before you print anything out thou, I suggest you edit it, as explanations of Fibro can get very, very wordy, and not many ppl will want to read it all

 

Rose - October 14

I have this with my son... he thinks/ has thought... that all I need to do is just "rest up"... and I will be able to work again next year...I told him... I don't think its going to happen quite like that... he has a friend who has fibro... and she has been a real help... trying to explain to him... we can support each other... and our friends families, by stepping up to the plate in this way... I don't know what is going to happen...but I have to tell you... the sun will come up tomorrow... on you... and your loved one with fibro... take it one day at a time.

 

mona - November 12

look in the general file and see the letter to normals.. it is a great letter and might help you with family and friends mona

 

honora2929 - September 23

I think my children are so used to me being unwell ,that they dont seem to care at all if i try calmly to communicate with them about they just faze over and dont listen .They are good kids in other ways .

 

colleen steele - November 1

Hi mmkmmk ...I can completey understand what you mean.It is most frustrating trying to explain.I can't get my husband to read one single thing I have given him nor does he listen to me about it either.He just doesn't care.For others though , one way I found that seems to work for the most part is that I tell people to imagine running as fast as they can in about 3-4 feet of water for hours and hours. And that is not to mention all the other things that go along with fibro. [i.e.headacnes,fatigue,sleeplessness,etc,etc] Or for them to recall the last time they had a real bad flu where every fiber of there being was screaming in pain. Then let them know we feel like that 24-7. I usually can get an "oh !, I had no idea" .If they don't ask for more information then I feel they weren't intrested in the first place. I don't waste my breath or my energy.......Good Luck & Good Health..........Colleen

 

TERESA - November 4

Honora & Colleen both of you're justifed in the way you feel, but if you can think back to a time when you were not in sooo much pain, can you remember the co-worker who was always sick, calling in sick or complaining of pain when they WERE working? I can & I remember thinking they were just trying to get out of work (making more for me to do)! Today I see things a bit differently. I think your husband & children are not indifferent, but maybe FRIGHTEN! Avoiding the problem, like out of sight out of mind. Especially the adults in our lives! For them I think if they don't read about it, IT DOESN'T EXISIST!!

 

carm - November 4

Go to FM web sites look up articles and such you should be about to print them

 

fibromom05 - May 22

You know, I've tried to say things to even my own mother and she changes the subject. I've sent her multiple links to learn about it and she's never brought it up so I know she didnt' read any of it. It makes me sad and then reminds me how selfish she can be :(

 

star09 - July 24

My husband and his parents have been great support but I don't have the nerve to tell my side of the family because they are so critical. So for now I am deaing with fibro without the critisism. Good luck with your families.

 

Stacey373 - July 25

Oh My Gosh, Star! I hope you aren't actually ashamed of being sick? This isn't something you did to yourself on "purpose". Would you feel this way if you had cancer or diabetes or even broke your leg and had a cast on?

I'm sorry, but that makes me so sad to hear you say you can't talk to your family about your disease. I totally understand that a lot of people don't understand fibromyalgia and they can be very critical and un-sympathetic. And I have definitely had to deal with my share of those kind of family members and friends. But this isn't something you should have to "hide" and just maybe the more we all talk to people about this, the more people will start understanding that it really is a "real" illness.

I don't know...I know it's hard and it can even be some what "embarrassing". I don't know if that's the right word to use or not. I know I don't like to go around telling everyone what is wrong with me because I don't want them to "feel sorry" for me or treat me differently. So I usually just say that I have a bad headache or my back hurts or stuff that "normal" people can understand. And I know it would be ALOT harder to talk about this to someone if I knew they were going to be critical and un-sympathetic, but I guess I would still tell them and then try to "ignore" the negative...but then again, maybe you are better off not dealing with the stress of negative people.

I just don't know....I'm glad that you have the support of your husband and his family and hopefully someday you will feel comfortable talking to your family about this. And I'm glad that you are on this forum to talk to people who really do understand what you are going through. I wish you all the best. And just so you know...I'm always here to listen to you vent...I know we all need to do that from time to time! LOL Take Care, Stacey :o)

 

Fantod - August 9

Here is one that I put together which may help you.

This document was prepared for people who are new to the chat board of which I am a participant.
It is my experience that many doctor’s either do not adequately educate themselves or their patients about the options and realities of living with Fibromyalgia (FMS). And, there are still plenty of doctors out there that think FMS is a figment of our collective imaginations.

I'm going to give you a crash course on Fibromyalgia (FMS) so that you have a better understanding of what is happening to your body.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation and the Centers for Disease Control. and the World Health Organization. OTC remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

If you don't want to share this website with your husband, family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

A rheumatologist is the doctor best suited to help you manage your symptoms. There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. That also includes Splenda. If you require a sweetener, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

And finally, the National Fibromyalgia Association has a list of fibro-friendly doctors available for quite a few states. Not all rheumatologists are created equal. If you feel that your current doctor is not addressing your needs, than get a second opinion. Be sure to take a copy of your medical record and current tests with you to save time and money.

 

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