my husband has been to the doc with me and they told him what it is i have but yet when i say im to tired or my back hurts he says so does mine…he says he understands but im not so sure…i alson havent told many people about my fibro yet cause ive been dealing with it for five years now and its just another thing that theyll say …its just in your head. or your sick again??? i dont wish this on anybody but sometimes i do wish they would have to live a day in my shoes…just to see how hard it is for ke just to make it through one day
That is exactly what I go through. Not one person, even my very best friend, understands. She will say "I've met someone with Fibro and they get along just fine". I feel the people think I like to be sick or they will say "You're sick again?." So, I don't really don't say anything to anybody anymore. That is why I joined this site to have someone to talk to. Right now my hips, hands, and neck hurt so bad I'm holding back tears I've had fibro for about 15 years now, right after my divorce. My ex-husband would have never put up with it!! Gentle hugs Tawnycat. PS My cat, Tawny is very understanding!
I must say that if people would keep on like this for an indefinite amount of time, I would grow very weary of them and ditch them. You DO have a right to be sick, to say so and to have a bad day because of it. Allow yourself that dignity, that small kindness. Admitting to fibro doesn't make one weak, and I'm afraid that newer people here do have that fear, whereas the opposite is truer, the more you hide your fibro, the bigger of a monster it seems to become.
Maybe in your hubby's case, he's saying he has the same problem as you because he's trying to reach out and empathize with you over this nasty illness. Telling others is tough because you never know how they'll take it and if they'll turn into emotional dead weights that you have to carry around. Ok enuff from me as I'm officially exhausted and ready for bed! If I've rambled a bit, please forgive me it's the exhaustion.
Bless you, Tawnycat, for withholding such a huge, painful secret because others cannot deal with it. They treat us like we're baby snatchers or something.
I'm so, so sorry about your hips, hands and neck. i use Salon pas patches for these pains and they do help some. They are over the counter and inexpensive. I use 2 or 3 in a particular sore area.
Please do come back again! I enjoy your responses and it's good to have people come here who need help and find it. Everyone here really tries to help others. We'll try to help you too.
BTW, two questions: 1. Are you hypermobile? 2. Do your hands turn blue or white?
HELLO I AM NEW TO FIBRO:: YOU ARE SO RIGHT!! PEOPLE LOOK AT US AND SAY "YOU LOOK SO GOOD HOW YOU BE SO SICK"!!!!!!!!!!!!!!!!!!!!!!! NORMALLY I DO NOT SAY MUCH. LUPUS, MS CONJESTIVE HEART FAILURE AND FIBRO. THESE ARE HIDDEN DISABLITIES. SO, JUST HANG TUFF AND REMEMBER YOU CAN AIR YOUR FEELINGS HERE. NO ONE CAN EVER WALK IN OUR SHOES!!!!!! JUST REMEMBER ALL OF US ARE HERE FOR EACH OTHER. THAT IS WHY I JOINED THIS CHAT LINE/ DISCUSSIONS.
I KNOW PRETTY MUCH ABOUT WHAT YOU ARE GOING THRU. I AM DIVORCED AND I HAVE HAD ALL TYPES OF PEOPLE COME UP TO ME. MY OWN CHRUCH CAN NOT RELA TE TO ME. SO CAN YOU IMAGE THAT YOUR FAMILY CAN NOT FEEL WHAT WE ARE EXPERIENCING. THE FIRST TIME IN MY LIFE SOMEONE SAID "I SAW AN NEWSFILM ABOUT LUPUS". FINALLY, THEY KNOW IT IS NOT IN MY HEAD. JUST HANG TUFF AND I KNOW IT IS HARD BELIEVE ME. COME IN HERE AND VENT. DO NOT KEEP IT INSIDE OR YOU WILL BE SICKER. I LEARNED THE HARD WAY. ENCLOSED IS MY EMAIL ADDRESS. I WILL TRY MY BEST IN KEEP IN CONTACT WITH YOU. I MAY HAVE A GROWTH ON MY VOCAL CORDS. I NEED MORE SUPPORT NOW THAN EVER.
IF SOMETHING HAPPENS TO MY MOTHER I HAVE NO OTHER FAMILY AND I WILL BE LEFT ALONE WITH MY SERVICE DOG. SO, SOMETIMES IT IS BETTER TO HAVE SOMEONE IN THE FAMILY TO TALK TO BUT TYHE CHAT AND DISCUSSION ROOM ARE HERE TO VENT.
MAY GOD KEEP YOU WELL AND I PRAY MAYBE SOMEDAY IT WILL BE A KNOW PROBLEM SO, PEOPLE WILL NOT JUDGE US!!!!!!!!!!!!!!!!!!!!!!
MANY BLESSINGS
MICHELE AND SERVICE DOG RUSH
It does seem to be a balancing act. I was telling someone the other day about Ehlers Danlos and that the pain sounds like everyone else’s pain sometimes when you first hear the symptoms. but it doesn’t compare. she said she has the same problem with endometriosis. People tell her that ‘yeah they have period cramps too.’ But its not the same ball game. I understand since I had end too but its much better since the surgery to remove it. she is going to be checked for EDS too. everyone with fibro that is hypermobile (see the Beighton test) should see an EDS specialist (geneticist). Your doctor likely does not know how to diagnose it.
But anyway, I decided to try to let people know about EDS and my body pain and fatigue but to try not to bring it up too often. Its hard to do on a bad day but I’m having so many really bad days, I have to be better at pretending to be fine or they won’t want to hang around me I think.
I totally sympathise. It seems that most of us have or are going through this. Because we’ve lived with it struggling on without complaining, others find it hard to believe it when we’re diagnosed. The diagnosis doesn’t change our symptoms it just gives it a name and a validity. Somehow I think they feel that because we’ve now got a name for it we’ll exaggerate, invent or lie about the symptoms. They don’t understand we’ve suffered in silence all this time.
Yes, it's really bad when people around you don't/won't hear that you are really and truly sick. If your husband is the least bit open, tell him that when you say fatigue you don't mean you're beat or tired. It's much more like lifting weights to the point of muscle fatigue, when your muscles simply refuse to perform any more. THAT is the kind of fatigue fibro sufferers put up with. Maybe show him some of the things Laura Hillenbrand, who has chronic fatigue, has written about her disease. It IS hard to make it through the day, and all of us at this site know what you're going through. Do you have someone you consider a true friend? Sit down with them and say, I really need you to understand this.
And at least be aware that here is a place you can come and know that people will understand.
I have the same problem with my family and with my own PCP. I have to go to a doctor's appointment today hoping to get something to help with the pain. Last time I went, he just told me that he doesn't like giving out narcotics. I didn't ask for narcotics, but I did ask for something for pain. I know there has to be something else out there that could work. In the end, he gave me nothing, I even explained how horrible I feel and that I can't walk. Guess he doesn't believe me. My family knows I have fibro, but seem to think I just have a few aches and pains that can be remedied with Motrin. Ha! Motrin can't touch this stuff! Anyway, I can empathize with you on how people don't understand. I have no one to talk to, so I come on here. I have learned a lot from the members here and am so glad I found them! Hugs!
When I was first diagnosed back in the early 1990's, people had not heard of Fibro. Hell, I even went to a doctor who mispronounced it. Twenty years later, Fibro has a foothold in American culture. For example,
- Celebrities have FM (actor Morgan Freeman, comedian/actressJaneane Garofalo, actress Susan Flannery, singer Sinead O'Connor, actor Michael James Hastings, model Jo Guest, etc.,);
- there are national commercials for Cymbalta and Lyrica where the lead theme is Fibro and lists the symptoms;
- the life of a rheumatologist has drastically changed from 90% rheumatological diseases/10% Fibro to 90% Fibro/10% rheumatological diseases.
- Twenty years ago, there were nearly no national organizations or many support groups for Fibro. Now, there are national organizations for FM, specific periodicals (FMAware, Fibromyalgia Frontiers, etc.,), dozens of international online support groups and groups that cater to Fibro and chronic pain are all over the place. Go to Google, type in "Chronic Pain Support Group" or "Fibromyalgia Support Group" and local zip code and see how many options there are. You'll be surprised.
Here is what I tell people when they ask me what fibrolyalgia is (I slow down at this part). FM is a CENTRAL NERVOUS SYSTEM DISORDER that encompasses everything from widespread musculoskeletal pain (like you've been run down by a Mack truck) to fatigue (like you are running hip deep in mud), sleep issues, memory problems and mood issues. Fibromyalgia AMPLIFIES PAIN SIGNALS by affecting the way the brain processes pain signals and it affects everyone differently. My pain is different than your pain because my brain processes the same pain in different ways.
If the person is still listening, I tell them that nobody knows how one gets Fibro, there is no standard/uniform treatment that works on the majority of fibro patients (what works for me will probably NOT work for you) and there is no cure for Fibromyalgia.
People will dismiss FM because it is an invisible disability. They will say stuff like "You look too good to be in pain" or something that dismisses what you are experiencing. Here's what I do with that. You know what? It is not a competition to see who is more pain. I'm dealing with what I've been given to deal with and that's all I can do. And I leave it at that.
On the bright side, many people with fibro are able to carve out a nice existence, go to work, have kids, travel, etc., But just as many are crippled by the condition which often masks other conditions that go untreated.
Back in 1991, doctors, as a whole, did not want the diagnosis to be fibromylgia. I mean, if you are a doctor, do you want to tell your patient that we know what to name what you have but not how you got it, how to treat it or how to get rid of it. As a result, FM was often diagnosed as Myofascial Pain Syndrome, which put the pressure of getting better on the patient. Why? Because MPS is treatable and if you aren't getting better then you are not doing enough. It's funny, looking back at it that the same things that help control FM are the things they recommend for MPS - keeping your weight under control, regular exercise, regular sleep, enough sleep, physical therapy, etc.,
Since the early 1990's, doctors have flipped and done a 180. rather than not diagnosing FM, they tend to over-diagnose FM. If new pain/symptoms develop, doctors tend to lump in the new symptoms into the myriad of symptoms you already have under the FM-umbrella. It is crucial to make sure you do not fall into the trend of simply saying "the new pain I have in my XXXXX is part of my FM" because it very well not be.
Deej I understand how u feel. My fiancee would say the same things to me. One day he said to me y are u so tired you dont do anything… I said to him… do you remember how you felt when you had the flu really bad and you hurt to move you felt so weak. He said yeah… I said good welcome to my world… I feel like that everyday… I fight my body just to do thingd around the house. He understands now and everyday he will ask hows my day or how do you feel. They have to go through there feelings to just like we do. Will they ever fully understand… NO I don’t think they will. It was a long process with him and I but hes coming around and i believe yours will to.
This might help http://forum.livingwithfibro.org/forum/topics/why-you-hurt-from-head-to-toe?xg_source=activity
Best wishes
Sheila
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Please read this story I attached. It explains our "invisible" illness to a t. It's a great way to explain to others what is going on with you. If they still don't get it I'm not sure what to do. I have found, over the course of my own illness, that either people get it or they don't. Not much you can do.
I have 2 sisters and neither of them "get it" although they do their best to be patient with me. I have explained it to them numerous times. Things affect me on a profound level so I don't need to know EVERYTHING. If you had an argument with your spouse- I don't need the details because it causes pain. Some things should be shared and I'm just hoping that they are able to discern what is important and what is not. So, one of my sisters doesn't speak to me anymore because her life is nothing but issues and drama- not exactly what I had hoped for :( My other sister tries to compare her "pains" to mine also... and we've actually had arguments about her not understanding. I tell her one thing and she makes that "thing" conform to whatever she wants it to be and goes from there. Also not helpful, but she's trying.
Good luck in your quest to find understanding. It's hard and that's why I found this group.
I second everything Deb said. I have HEDS and was just diagnosed at U of M though I've been dealing with pain and other issues from the EDS for years. I'm lucky in that my rheumatologist sent me to U of M rheumatology who then sent me to the geneticist as soon as I showed her my hypermobility. I didn't know that bending your thumbs weird or having things snap crack and pop constantly was a problem. I've done it my whole life so I thought it was normal. My joints have also never moved smoothly but I had no idea that they were subluxing and dislocating. A subluxation is a partial dislocation. EDS hurts immensely. I talk about EDS a lot but that's because it needs awareness. I was diagnosed with fibro long before EDS. SK made a group for those with fibro and hypermobility. I joined yesterday and see how ti invite people if anyone needs an invite. hugs and love to all who need it.
Susan W
I have given up trying to explain to people what it means to have Fibromyalgia. While I am not as alone as some others are ( I do have wonderful friends that mean well) it is pointless to try and explain how I feel or what I am going through. When people complain of similar issues that you and I know could not even compare try to remember that they are actually trying to empathize (usually) in their own way. My very best girlfriends were even angry at me for an entire year (right before I was diagnosed). I found out later it was because they were afraid that I was going to be diagnosed with some fatal disease and wouldn't be around for them anymore. Selfish, sure and as hurt as I was I had to realize people just react terribly when things aren't good, and people say some really thoughtless things when they don't know what to say. I just try to remember that people get frustrated when they can't help you.
I get frustrated too when my husband brings up his arthritis pains when I could really use a little sympathy. Then he gets mad when I complain that he needs to hug me more gently or stop scratching my back because it hurts. But it doesn’t always hurt in the same place or the same way. So I try to tell him what I want or need. If’s not fair to expect him to know.
When I told one of my children that I had Fibromyalgia in addition to all the other aliments. One said, "That's a made up disease" and the other said "No one can have that many things wrong with them"
I start almost every day with a soak in the tub before I can even think of what next. I don't want to minimize other people's illnesses, but maybe they wouldn't complain so loudly about their problems or so often if they spent a day in our shoes.
...and the other said "No one can have that many things wrong with them"
Boy, it must be awesome to be in perfect health. I bet they have no cavities, dandruff or hemorrhoids. I bet their kids have no issues either. Certainly no depression, alcoholism or ADHD.
Truly, the grass is always greener.
You know, let me say this. EVERYBODY HAS SOMETHING. Even the idiot who said the above quote. At some point, you are going to have something and if you're lucky it will not cascade into a myriad of "stuff"
The same reaction went around the issue of ADD/ADHD for awhile. People were saying "Aw, gee, I get distracted sometimes, too. What's the big deal?" Well, I live with three wonderful people who have it, and it's an invisible disorder that many don't understand because they can't see the struggle. The same thing happens with fibro.
It's just in your head? Tell him to check out the medical research articles and abstracts. They are finding physical proof. Pub Med is one place for medical abstracts, but I find that if you need something less overwhelming, prohealth.com has research articles that help. I can't think of the others right now because I'm in a fog, but if you email me, I'll send them to you later.
I left printouts of helpful information around the house. Hey, honey, check this out!
I also took an additional approach of saying, "I wonder if you have it too". I would pull out my books on Fibro, which of course were heavily highlighted, and started to go through the symptoms with him. It didn't take long for him to admit it wasn't the same.
Sometimes, though, I think our spouses just need some sympathy and a hug. Their backs may hurt, and a massage does wonders. We have so much going on ourselves, that they can't deal with it all.
We had the issue of tired vs. body fatigue here. Then I went and slept every time I got fatigued. If I didn't, I dropped things. He got the message. :)
There are some excellent books, and a reference library is very helpful for moments like this. Devin Starlanyl, Mark Pellegrino, etc. are good resources because they have a doctor's point of view.
The comment made by someone else regarding fibro being a central nervous system is really a good summary. I often say, "that darned central nervous system" to remind them that it's frustrating and physically based.
I hope this helps. It's a challenge to deal with an invisible illness.
Hugs,
Susan (Scribelle)
thankyou dor all the comments! they helped alot!