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5 Replies
lorieholtz - November 14

ohhh here i am again, once again feeling like all i do is complain. seriously i try to ask my god let this get better plzzzzz. tears right now run down my cheek not sure what are the exact words to use here, cux i feel like every word i say is so important only because maybe it might help someone else out there going thru my same situation. today seems like such a very low day for me..not sure why. we have had rain for quite a few days now and that always brings on more pain. plus i thought i had the dr thing figured out and once again i found out it wouldn't work, due to their circumstances with my ins. carriers. i feel so lost SO LOST. which way to turn i no longer know. i've taken suggestion on that site for fibro but there was no one near to me, yes i guess i could travel quite aways again, but seriously my body just won't let me. u know if it wasn't for here i wouldn't know why my eyesite is messed up on different days, or my earaches and there is no infection, or vertigo all the time, or why i get facial pain or weakness, or why i have pain here one day or here another day, or why i'm so tired, or why i'm depressesd or anxiety, or why my muscles twitch all over, or why days i can't walk straight, or why my memory is so horrible that i think i must be getting alzhimers and ask dr's to ck me for this, or why my fingers will not think with my mind, or why i can't remember what i did 5 min ago and need help for someone else to remind me if i took all my appropiate meds.. yeah just 5 mins and its all gone, or why i can't sleep longer than 3hrs, or why or why the pain, the pain. i feel so angry for all the drs i've had in the past that never ever told me or explained to me about this awful fms and what to expect. the only reason i knew i had this is cux i look at one of those papers u take out to the recepionist to ck and there listed was fms as one of my dx. this continued to be one with every specialist i would see, but did one of them ever ever tell me what this was...NO they didn't. all that was ever addressed was my spinal issues and it led me to believe that everything i was going thur was from this. over the yrs i've been poked progged as if i wasn't anylonger a person, but a thing. just a thing to satisfy for the moment. no longer a human with feelings or wantings for a normal life. now after dealing with this last group of drs it has left me with a deep and i mean deep hurt.. i feel such mistrust in the medical field and i'm seriously scared of them. i acted even as a person who was activley aware of procedures meds dx and took what i thought was an active role. all it got me into was a mess and quite mess. i know right now i'm going to get a letter from my dr firing me as a patient and i feel that its so unfair, i did all those things ur supposed to do as far as keeping the contracts that med drs have u do. i wouldn't even take a vitamin without asking permission.. omg how crazy they make u feel.. like u've lost all ur ability in making choices. yes i did do one thing that u could say was wrong and that was when i was reduced suddenly from my pain meds and put on this hidious patch.. once again not given any info about what to expect nor a reason in the dropage of my reg. meds.and their i stood for 3 wks with my pain level incresing plus a withdrawl from lower doses of the that med. and the patch not doing a thing, until all of a sudden and then it was BOOM and it was way to strong or to much of a reaction for my body to handle. now take in consideratin that just a week prior from another med put me into the hospital and was still dealing with that withdrawl. and that particular med took alot from me that i treasured so dearly. even though before all this came into place i sooo talked to my dr bout all my problems with meds. i even called him and told the office that i was throwing up blood and i mean alot of it, and they said ohh that med wouldn't cux this. well i found out that not to be the fact and i should have been taken off of it immediatley, but the oh why oh why. now he has set me up with an appt to see a dr. did he tell me what type..NO and why..NO, but after cking more into it i find that its a NP of physc. do any of u know how that makes me feel like i did something wrong and omg would he admit that he did things wrong in my care. i finally trusted someone in over a year in this department and look where it has put me. i look like the one that has done whatever. he can't simply admit that he has put me on to 2 meds that were def bad for me and had horrible reations to. i sit here and think what do i say to this person, how do i react, how do i get her to listen to me with reasiong cux u know that everyone thinks their dr's do no wrong. i really felt in the beginning of our relationship that he was hitting the situation, but from the get go i went there for injections which were never done until my last vist so that was from may to oct. i'm tired of feeling guilty like i've done something wrong.. i know i haven't!!! i've just been mistreated and not heard and not once was anyof those above things ever addressed..NEVER. i dread going in here cux i know it going to be bout me defending myself and this is just not stress that i need at the moment. do they even know how i would much prefer to be normal ..normal without pain and such stange symptoms. tell me what do i say to her i thing what this dr has in mind is to put me on suboxone and damnit thats not what i need nor have done to do such a thing. i feel like all are trying to cover their butts, but at my expense. i just cant take this type of trmt anylonger. sure i'll just do this go off all meds and sit here and suffer and whatever, but i want to be treated like i should be. Fantod i know ur good at this sort of thing and axxie and some of u others i sure hope to hear bk from u soon. i feel so desperate for answers. seriously thought i've never been sue happy but i feel like if i could i would this man in a heartbeat.


Canada17 - November 15

There is no such thing as normal, of that I am sure.

I think you have the right idea to feel as though it is important to share what you are feeling and experiencing with your FM. There is so little known about this syndrome that everyone will benefit from the dialogue.

I can't imagine the kind of pain you are going through. My doctor told me that I am the best case of FM that she has seen. While I have pretty well all the symptoms of it, and new ones, they are not as severe as they could be. But I suffer daily and I know my husband worries that I will only get worse.

When I talked to my GP about an FMS diagnosis, he sent me for a myriad of blood work. Eight vials of blood at once; brutal! He tested me for cancer, lupus, thyroid problems and various deficiencies and imbalances. If any one of those tests had come back positive, I could have been diagnosed with something that has a much higher mortality rate.

Those of us who are FMS need to be able to find balance and peace in our lives. It is rather annoying that life has a way of making us feel like anything worth having isn't going to be easy.

I find it very interesting and empowering that the symbol for FMS is a purple butterfly. It symbolizes the metamorphosis of our pain into something beautiful.

Remember that everything happens for a reason and we all have a purpose. If you believe in God, I believe that any God would only give you as much as you can take. If you don't believe in God, believe in yourself; we are capable of amazing things. ; )


Fantod - November 15

Hi Lorie - You've outdone yourself this time - anymore typing and you'd run off of the page - lol. That being said, I understand that you feel totally overwhelmed and that the medical profession has a contract out on you. And, I don't blame you one bit for feeling like that based upon what I know thus far.

When you see this doctor, you need to remain calm and logical. You should sit down and write yourself a speech so you can practice. It should be factual and nonbiased. You need to calmly state your health issues, that no one ever took the time to tell you that you have Fibromyalgia, the severity of pain you experience along with other symptoms like memory issues etc, your bad reactions to medication and your general frustration that you keep getting bounced from one doctor to another and no one appears to be taking any responsibility for your illness. You should also tell them that you are seeing a counselor for additional support.

I think that if you present a calm and collected Lori that you may have a better chance of getting this person to really listen to you. If you pretend that you are talking about someone else, maybe it will help you get through your speech without being overly emotional. Be sure you listen to any points that the doctor may make - let them finish. Answer all of the questions that they may ask carefully, calmly and completely. This is your one chance to be heard so you want to get this right. Take your notes with you incase you lose your train of thought.
I think if you go in there and fly off of the handle (and I wouldn't blame you for it)you may validate whatever your doctor may have told them in advance of your appointment. So, it is my feeling that you don't want to do that.

And finally, I would be complaining vehemently to my health inusrance carrier about how you have been treated by this doctor and that you called his office to report that you were vomiting blood and they totally disregarded your complaint.

Lori - You can do this. You have complex medical problems and so far no one seems to get the big picture. If you can present a concise explanation of what has happened, how you feel and what you want, I would hope that this doctor will listen. I'd also like to recommend that you discuss this situation with your counselor to see what support that they might offer to you.

I hope thar my comments are helpful to you in some way. I'm not at my best this evening so I feel like I may have rambled a bit. You are not alone. Take care Lori.


KateT1969 - November 15

medititation(in any form), magnesium suppliments (ask about it near you) , gentle swimming , no cycling ... increase pineapple in your diet if you like it or its in season... only plus thing I have now from having FMS is a high tolerance pain threshold , I know i am getting a bad cycle of fms when the blinding headaches start , the eating patter changes from eating anything to only wants fresh pallet clensing foods and anything not turns my stomach like Blah, Holding the telephone for long hurts, typing hurts, hanging wet towels hurt ... ouch


KateT1969 - November 15

Shower metitation

When in the shower try this, put your fingers in your ears and place the whole head into the main flow of the shower .. hear the rapid water sounds like a horrid thunderstorm... gently come to the edge of the water flowing over you into the sunshine .. its amazing how simple and how different 5 mins in the shower feels (if energy dont drain before that)


lorieholtz - November 20

well i've waited to come in here cux i knew i so went off, but its been so over whemling. i went to a dr. and i found out i'm also now having small strokes as well. omg what a deal my cards r so against me. so of my symptoms r fms and some from that. figure it out cux i can't. yes fantod i really over did it on this one but omg its so getting to me that i can't deal with it anylonger. i am exhausted.. literally. now i've been put on med for that and having reaction that i've got to stop. i don't know i just dont.



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