Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
hey yall!
i"m 29 here.....and i've been seeing a chronic pain psychologist for about 3 yrs....
he has been great to me. I usually (TRY to) attend every Monday in a group setting with other chronic pain patients.
Dr. M knows about fibro pretty well and about my long list of other chronic pain conditions (ex: arthritis of the spine in my neck and lumbar, IBS, chronic migraines, plantar fasceitis, my back & neck injury, chronic kidney infections, etc). in fact, he helped my ex and I (back when we were together) when my ex thought i was a hypochondriac and really educated the guy about fibro and the other things.
I have also recently been seeing a regular psychologist on the side that works together with Dr. M for about 2 months now. she's seeing me for mild depression and mild PTSD.
the new counselor doesn't know a darn thing about fibro. and before i ever came along, I don't think she's even heard of it before. it's been a bit frustrating for me. several times she has brought to my attention that I should push myself to go back to work. she sees me as a young person with lots of hope. never mind that i'm in freakin pain every damn day of my life! and every evening i have to talk my self into the shower cause i'm so darn tired! not to mention it takes a long time to get out of bed and hours to get out of the house. one errand or house chore takes me down for the day.
anyways.... i went to see Dr M (the chronic pain psychologist) yesterday and he is usually supportive of me. and guess what he says to me?! out of the blue all of a sudden he is telling me that I"m so young and I have my whole future ahead of me that I should be pushing my self to return back to work!
the older guys in my group don't even have HALF the problems I DO! but he never pushed them to go back to work!
boy i let him have it! it's like he forgot all the crazy symptoms this nuthouse illness does to you! you can't concentrate, remember anything, walk into walls, and my last flare (this past summer) was like 2.5 months long! yeah age has a lot to do with that one......
plus this past week my podiatrist said i may have arthritis in my feet now, too. great more pain to add to the pain...... sure I'm still a young spring chicken! i feel 70!
i"m 29 here.....and i've been seeing a chronic pain psychologist for about 3 yrs....
he has been great to me. I usually (TRY to) attend every Monday in a group setting with other chronic pain patients.
Dr. M knows about fibro pretty well and about my long list of other chronic pain conditions (ex: arthritis of the spine in my neck and lumbar, IBS, chronic migraines, plantar fasceitis, my back & neck injury, chronic kidney infections, etc). in fact, he helped my ex and I (back when we were together) when my ex thought i was a hypochondriac and really educated the guy about fibro and the other things.
I have also recently been seeing a regular psychologist on the side that works together with Dr. M for about 2 months now. she's seeing me for mild depression and mild PTSD.
the new counselor doesn't know a darn thing about fibro. and before i ever came along, I don't think she's even heard of it before. it's been a bit frustrating for me. several times she has brought to my attention that I should push myself to go back to work. she sees me as a young person with lots of hope. never mind that i'm in freakin pain every damn day of my life! and every evening i have to talk my self into the shower cause i'm so darn tired! not to mention it takes a long time to get out of bed and hours to get out of the house. one errand or house chore takes me down for the day.
anyways.... i went to see Dr M (the chronic pain psychologist) yesterday and he is usually supportive of me. and guess what he says to me?! out of the blue all of a sudden he is telling me that I"m so young and I have my whole future ahead of me that I should be pushing my self to return back to work!
the older guys in my group don't even have HALF the problems I DO! but he never pushed them to go back to work!
boy i let him have it! it's like he forgot all the crazy symptoms this nuthouse illness does to you! you can't concentrate, remember anything, walk into walls, and my last flare (this past summer) was like 2.5 months long! yeah age has a lot to do with that one......
plus this past week my podiatrist said i may have arthritis in my feet now, too. great more pain to add to the pain...... sure I'm still a young spring chicken! i feel 70!
Dr M was like "It doesn't have to be a physically demanding job, you know"
um... ok my last job was a desk job and i screwed it up royally. all i had to do was sit there and file things and answer calls. somehow, thanks to fibro, i couln't even keep up with THAT. i was sleeping on the job, forgetting everything, misfiling everything, forgetting events, meetings, misspelling everything, nothing was getting done.
i tried to tell the guy that just because i look young and "good" doesn't mean i'm good to work. he of all people should know this. i wonder where he got this idea? from the new psychologist (that knows NOTHING about fibro)?
I my book you have every right to be angry to high heaven. At times, I share with you that same anger. Below is a link to the first post I put up here. In it I express something you may identify with.
http://www.dailystrength.org/c/Fibromyalgia/forum/10652741-hello-my-name-randy
Yeah, and I rant about it in my journal too!
Take care,
Randy
It is for this very reason, I just don't talk about fibro to any doctor! At all! I tell them that I have it and that's all they need to know. No one wants to touch a 37yr old with Fibro in this town.
i don't really say much to people and i there's only a few that know i have this illness. and even the ones that know about it, i don't say much to them about how i feel. if i say anything, i usually get the "you're so young bla blah blah..."
and now i'm getting it from my chronic pain psychologist, the last person I'd expect to hear it from.
i'm sorry you feel you have to keep your mouth shut. having this crap really shouldn't be this way. we SHOULD be getting support from people. and if not, at least understanding at the very least. but that's something very hard to ask for. seems like people still think we are faking something.
Ialso am only 46 still young but feel like 70 most days and I'm trying to grt disability,and thats one thing here in Ohio,they make their decision on is your age,no matter whay symptoms and sicknesses you have.my husband's lawyer for his case told him well its better if your over 50,well my hubby's 49,his hearing is nov.4th,please pray he gets it.His Dr has down on his file that he can never work again,age shouldn't matter,just because your young doesn't mean your healthy and able to work. I will be praying for you,and sending Gentle Hugs :)
it only took me 1 year to get SSDI.
i got it because i got evaluated for memory and failed all over the map! it was the full neuro-psych test. my results were all over and the prognosis was that because there are no cures for any of the conditions, I am permanently stuck with short term memory and cognitive dysfunction. right after that was submitted, i was approved.
so much for this guy telling me that i can go back to work.
do you know how many time i re-wrote this to correct all the spelling?.....sheez....
i think every person that has fibro should get a neuro-psych evaluation. heck if our illness doesn't show up on Xrays, it at least showed up on my "brain" test! ....fail!
telling me to go back to work pissed me off enough, maybe i should stop going to the group. only things is, going there was helping me get referrals, he would check on status of things for me, etc.
and it's funny that he said that cuz i was actually thinking of cutting back more of my activities since my pain has been elevated.
lucky, i'll say a prayer for you both. i hope you get it. keep at it and don't giv eup
About 3 years ago, I gave in to numerous family/friend requests because my depression was suffocating me. By then, I was 34 and had been in chronic Fibro and nerve damage pain since I was 30. Prior to that and for 5 years before, I lived with what turned out to be intense gallbladder pain as my gallbladder failed. I was so ill by the time it was removed. I couldn't keep anything down, couldn't sleep, just kept losing weight. Did I know to research the surgeon? Nope. I was 27, sick, desperate and apparently naive.
My gallbladder was removed in 2001, I had 6 great months, and then I was hit with blinding pain in my back (behind where the gallbladder used to be and another spot directly behind the port opening for the camera). It grew worse and worse, I started vomitting again and I knew something was very wrong.
I tried calling the surgeon. Never could reach him - later I found out that he lost his malpractice insurance after being successfully sued by the wife of the man he killed while removing his gallbladder. I felt a wave of ice cold water rush through me when I was told that someone died. So, I guess I was lucky that I was just left with lifelong pain.
I didn't listen to anyone who told me to sue. Later I realized that I didn't listen because I was a zombie. Depressed beyond belief. Didn't speak unless spoken to, answering with one-word responses, no longer making eyecontact. I should've sued. My mom was right. She said to me that even though I wasn't thinking about kids then, I would want them later. So, if I at least got enough to afford adoption, it would be worth going to court.
By the time I was back in my right mind and contacted a lawyer, it was after the 2nd surgery (see below). I found out my case was cut-and-dry and I was 6 months too late.
A 2nd surgeon was found when a small incisional hernia was evident. My GP told me that there was no possible way the hernia was causing my pain - an organ would've had to have been trapped. But, I trusted surgeon #2. And, he went back into the port scar, widening it.
I woke up, found out the hernia was 2mm and it was just a bit of fat trapped. Rather than using mesh, he pulled my abdominal muscles together. I've never stopped feeling like someone was behind me, their arms wrapped around my midsection, keeping my lungs from fully inflating.
I went back to surgeon #2 to have stitches looked at and told him I couldn't breathe deeply. He told me that feeling would go away. As you can see from the end of the preceding paragraph, he was wrong. I always feel winded. I felt winded before my medications, before Fibro, before gaining weight. Oh, I also felt more pain.
Finally, after going to a PM specialist, a rheumatologist and my GP, I was put on my current dose of medications. They're a necessary evil - esp Neurontin.
And, that's what brought me to the therapist 3 years ago. By then, I realized that I was not going to get better, that I would live with pain, with sickness. The pain and illnesses derailed my career - for which I had busted my ass.
I was coming to terms with the fact that I couldn't have kids. Between the scar tissue and nerve damage in my upper abdomen and the high dose of Neurontin, I just couldn't have kids. Twenty minutes into my 1st meeting with the therapist he said to me, "How do you know you can't have kids?" I looked at him, I must've looked confused. I repeated the reasons. He said something like, "Well, did anyone tell you that you can't have kids?" Now I was getting pissed. I said that it was not safe to be pregnant while taking a high dose of Neurontin (and my other meds) and that a little bit of bloating caused me to become dizzy and lose my breath (let alone a pregnancy and the weight gain).
He said I was assuming I wouldn't get better and that I'd always have to take these medications (please note, by this point, I was 4 years into my Fibro diagnosis). He said I was upset over what may turn out to be nothing.
I thanked him, told him I didn't need to make a follow-up appointment, and left.
It took me 3years to either become depressed enough or just ready to try again with another therapist. This one said she doesn't push her clients but, she will question them. But, she said, if something is a fact, it's a fact - she's not going to debate me on something I know more about (my health). She said, "I'm not here to make you more depressed, to make you feel like no one is listening to you. I'm just here to help you cope with the countless losses."
So, I'm very happy for you that you had enough strength at 29 to speak your mind to the 'experts.' As many of us have said in the DS Fibro support group, we don't look sick. Because we don't look sick, we're not given the respect we deserve.
Really....who would ever pretend to have Fibro (or our related illnesses)? I know I didn't go to school to get two degrees, didn't work tons of unpaid overtime to build a career, didn't stay in a relationship for 8 1/2 years just to have it all go to hell via a made-up ailment.
I think it's pathetic that, in this day-and-age, we still have to defend ourselves, still have to push for proper treatment, still have to bend-over-backwards to prove we're sick and that it's not psychosomatic. We don't crave attention. It's not some form of Munchausen syndrome. If anything, we want to be normal again.
I don't blame the general public. Hell, when we look in the mirror, we see a healthy (but very tired) face staring back at us. Our bodies have turned against us and our faces can't even give us the respect to 'appear' sick.
But, I do blame doctors, psychologists, insurance companies. They should all know better.
I really don't think they understand that for most of us just trying to find ways to cope and exsist from day to day can be more then we can handle on a day to day basis.
take care
gentle hugs to all