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explaing fibromyagis
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An_256837 posted:
How do you tell people about fibromyalgia. I can't get my daughter to understand how I feel. She thinks I should go to a specialist, which I have, and that will fix everything. I did go to a specialist and he wanted to start all over with meds I already tried. I can't make her understand that I have no control over the attacks. any suggestions
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booch007 responded:
Good Morning,

I won with my family by taking my husband to the doctor with me. He saw my Trigger Point therapy and saw the areas of issue. Seeing was believing and then he became my advocate to the family as a whole.

This disease is something you live with eachday. It is ebb and flow, at times a bad day comes and then it is better on another day. It is like having the FLU EVERYDAY.

We have the spoon theory to lean on. In the fatigue department. We only have so many spoons to spend in a day. If laundry takes more than half of them, you must figure out what else you can do in the day for the rest you have left.

It is helpful to adjust your life for the fatigue the body gives.
You mentioned your meds didn't work. I just want to be the MD advocate here. If you were hydrated and supplements in and in balance a bit more maybe they would be ready to make a difference.

There were times I called the pharmacy to tell him the generic meds were no good and they didn't help me at all, could I have brand name. (Now I feel like a fool as it was ME who was no good...) I was pushing too hard and crossing lines left and right.

Making my life simpler and learning the new rules with this has brought me to a better place, hydrating was the biggest and it took time as your kidneys flush out alot of extra eachday but keep a bit behind. So it actually takes 30-60 days to get to a rehydrated state. (I don't think I ever was this well hydrated in my life). Even my skin improved!!

My body responded to everything better. I find in a flare and in bad pain, I need to circle my med box a bit, warmth with the hot paks and rest. I am amazed at anyone who can live this path and not take assistance. We are now considered challenged in our neurochemistry. So just the antidepressant class is helpful. Something to raise seratonin and norepinephrine. I fought that pill for about 8 years and finally took Savella, I have to say she is the bow on the box of meds I use. And I don't take that many. A Muscle relaxant, a Tramadol for pain and the savella (only 12.5mg...50mg twice a day is normal). But I take calcium, magnesium, vit D, CoQ10 and Vit B complex as well. The med box is full.

It is the toughest part behind getting the right doctor.....then this trial and error med period is hard. I found less is more, lower doses than others is all I could take. Sometimes it is the combo of meds that makes it work.

Journaling and talking honest with the doc, not looking for FIX and GONE, but moving and better is all you can ask. Geez, I wish you luck. I wish you all the help someone can get. I think too when you don't have an advocate in your family it makes the pain tougher as you tense to defend yourself. (And THAT is bad chemistry too)

Glad you are here, hope that someone has a great answer. Dr Starlanyl has a book called THE ADVOCATE it is on amazon. Maybe it will help you, it is for the dentist, doctors and family that have issue with this. She is a MD ( patient)and wrote it all for us.

Good luck, Nancy B
 
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katmandulou responded:
Hi An_256837 and welcome!

If your daughter doesn't understand., maybe she can't get her head around an illness without logic, which is exactly what FM is! I was lucky -my DH had done the research when the doc first said FM. When I was dx'ed (18 months after the onset of symptoms) he was ready with a lot of web links.

Do you like and trust your doc? That's the most important thing, IMHO. Mine has a PA, and I alternate seeing them. Seeing two people who talk about me later (in the good way!) makes me comfortable, it's better than seeing one doc 3-4 times a year and he/she can't remember me and my symptoms.

Nancy mentioned The Spoon theory. Here's the link: out http://www.butyoudontlooksick.com/ . It will help you explain to people what it's like to be in your body. There are some good resources in the right-hand column, too.


One of our FMily, Mimi, will tell you to have your doc check you for Vitamin D deficiency. Sounds simple, but we who live in the northern hemisphere are usually lacking in D. It's not a total cure, but it does help. And you should pace yourself throughout the day. Don't make yourself So tired you can't get off the sofa to go to bed. (I've done that!)


Have the best day you can possibly have,
Lou
 
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Anon_10089 responded:
Hello-

My husband, who is very supportive and believes in FM, still deep down thinks there must be a cure out there and that I just need to find it. I've explained to him quite a few times that medical science does not know what causes this!!

We are often baffled daily by FM, so I don't wonder that relatives are too. It's especially hard when we have good days, then suddenly crash, for seemingly no reason.

If your daughter truly wants to understand, then she could do some reading. There is a lot of information about how we feel and the symptoms--often weird--we experience. Have her come here if she wants. There is just no way that so many people could coincidentally have the same symptoms out of nowhere. There are also quite a few very recent studies that conclusively link PHYSICAL reasons or abnormalities in us. The leading researchers in FM no longer consider it to by a psychological condition. Unfortunately, many out there still do.

Doctors often don't know what to do with chronic pain patients. I've read articles written by doctors about how they can even dread us. It's not that they don't want to help (the good ones), it's that they don't really know how to. I think many doctors aren't wired to say "I don't know" but are more inclined to prescribe something in an effort to just do something. Hopefully your doctor will listen and really hear that you've tried certain meds before. You don't have to take them if you don't want to. If he is not listening to you, find a new doctor if possible, or have a serious conversation with him.

This board is also a great place for information and support. We know exactly what you're talking about and can empathize with crazy flares and symptoms. While it's nice to have family give us support and help, there are many here who only receive support here.
--JR
 
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dollbug responded:
Hello and welcome. MiMi from NC. I think we all *wish and hope* that we could get *cured*....is it possible? Well, it just might be some day, but right now the doctors say there is NO CURE.....and once we are *blessed or cursed* with FM...then we have to deal with it the rest of our lives.


I do not think a lot of us FMers even understand it. I know that I certainly don't. In the beginning I had all sorts of questions about this ugly and mean illness...it had invaded my life and I could not *control* it. Well, after a lot of research....I found out that yes, there are ways to cope with it. There are *tools* which will help you as well. You just have to find what works for you. We are all different and I think this is one reason why doctors have such problems with treating us. Most of them, probably at one time or another, did NOT even believe this illness was real. Over time and certainly with recent medical research, many have discovered that yes, it is indeed real.


I think that as you learn to deal with it, you will find that there are lots of *tools* which you can use to your advantage. This will take time and effort though....as anything you decide to try will take at least 6-8 weeks before your body will get the full potential of what it might do. There will be *tools* which you will try and perhaps know right off that what you are trying is NOT going to help you. I tried Cymbalta and really wanted it to work. I got sicker each day I took a pill. I finally knew that it was NOT the medicine for me. I could not put one foot in front of the other I was so sick. I called the doctor and he told me to *stop taking it right away*. I did. So you will have to decide whether or not something is working or not.


I encourage you to be sure and talk to your doctor about getting your Vitamin D level checked....which is important to a lot of people these days. Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well. You have to ASK the doctor to run the test though.


You don't say how old your daughter is...but perhaps she should do her own research about the wrath of the dragon, aka FM. I think once she does this then perhaps she will know that going to a specialist will NOT cure what you have.


You did not say what kind of *attacks* you are having....pain, fatigue or panic, some other kind?


If it is fatigue....I hope that you can find something that will help you. I have had this since 2005 and I have chronic fatigue and still have NOT found anything yet that has helped this. I am still looking though as I do think there is *something, somewhere that will make a difference*....I just have to find it.


I would also encourage you to be sure and check out the other info here under *tips* and *resources* and be sure and read the *member toolbox* as well. I am sure you will find some *tools* that perhaps you have not thought of trying.


Good luck.




MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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bette_kaffitz responded:
An, I was diagnosed in 1990 (the same year fibromyalgia got its name), but have had it since 1972. For the first 25 years or so, I did a lot of doctor shopping hoping for that magic mix of the right doctor who knew of the right medication to cure my fibro.

I did find a very knowledgeable neurologist who--once he saw me in a really bad flare--gave me the ultimate workup and ultimately put me on plaquenil, Neurontin, Ambien, cortisone, Flexeril, and the Duragesic pain patch all at once. I don't know which of these was responsible, but my flare went away and my baseline pain got lower, too.

I now see both my family practicioner and a pain specialist. (My extra special neurlologist left the area 15 years ago.) As the symptoms come and go, I am on or off each of those original medicines. I have had trials of each new "fibro" med as it came out. Most of them are impossible, because they prevent me from starting my urine flow--ouch!

Believe me, there is no magic cure out there. When there is, your family doctor will know about it. So will you. We FMers are a large base of patients, and we read the literature. We keep current as you must have noticed from reading the posts here. Because there are so many of us, almost every primary care physician knows how to diagnose us. She is also able to help you find the best medicine or combination of medicines for your particular case. And, when the ultimate cure comes along, she will know about it.

Tell your daughter that you have a chronic condition that is currently incurable, but that there are ways to make things better. Another thing: Every big pharmaceutical company is working on finding better ways to treat fibro. We are a potential goldmine for them. And they know it. So things are definitely looking up.

Towards better days,

Bette


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