ENDO Messages for February, 2001: Re: Endo & Fibromyalgia and Chronic Pain

Re: Endo & Fibromyalgia and Chronic Pain

From: B. (anonymous@obgyn.net)
Mon Feb 26 02:54:43 2001

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Dear Wendi,

Reading your email broke my heart not only do I hate hearing my endo sisters at their wits end. I also remember when I was hurting 24 hours a day 7 days a week. I had chronic fatigue and I could hardly make it up the stairs, let alone out of bed but I have a beautiful best friend called Schnoof and he is a dog, that I have to take care of, so it made me get up and force myself every day, I didn't have the energy but I pushed myself like we all do. The only time I would really get any relief, was when I begged for a narcotic injection from my doctor and thats when the pain was over the 10 on a pain scale, that only went to 10 and that didn't happen too often and it didn't always give me relief. The crunch came when I was hit by a car and recieved permanent damage to my shoulder, neck and arm and I was in and out of hospital for months..I had gone into hospital and I was in so much pain with my endo and had been suffering diarrhoea for 18 months and now with new injuries and it was only because I required injectable narcotic pain relief, 24 hours around the clock and finally I felt what it was like to have real relief..When the injections were stopped, the pain returned. Finally I was discharged to the care of a pain specialist and he sent me to another pain clinic, which was the most traumatic experience of my life and it led me to where I am today. I now have a wonderful pain specialist and he has worked with me to get my pain under control and managed. I have my good days and my bad but at least, finally my pain is not keeping me awake 24 hours a day 7 days a week. At one stage I didn't think I was going to make it through a day, let alone another year but I did and I am here today and able to get out of bed again and do more than I have been able to in years. I have recently written a paper .. on how to survive chronic pain, you can check it out at the link below - http://www.themestream.com/gspd_browse/browse/view_article.gsp?c_id=333216 I hope it is able to help you and others to regain, some of your life back and get some well deserved relief. It is your right to be pain free, no matter where you live. Good luck and please let me know if I can help you any further. Best Wishes,

Belle.

>----- Original Message -----
From: Wendi <anonymous@obgyn.net> To: Multiple recipients of list ENDO <anonymous@obgyn.net> Sent: Monday, February 26, 2001 11:53 AM Subject: Re: Endo & Fibromyalgia(Angie)

At Sun, 25 Feb 2001, Angie wrote: >
>Hey Guys, (Wendi & Lynn) I know I wasn't invited to this conversation,
>but I, too, had a tah/bso 16 months ago for endometriosis. I, too,
>continued to have pain. The kicker is...right after surgery I hurt from
>head to toe -- not just pelvic pain. The doctors told me that I had
>fibromyalgia -- I didn't buy it because I'd never had it prior to
>surgery, and my "gut instinct" just told me that wasn't so. I still
>have pain from endo, but the "fibromyalgia" pain is now gone. I'm not
>saying that neither of you have it -- perhaps you do -- but for me,
>getting the right HRT was the kick in the pants my body needed to get
>rid of the awful body and joint aches. I literally felt like my body
>was being torn apart. I couldn't take any of the traditional HRT they
>prescribe, and finally found a good combination of natural hrt that
>helped -- no, I'm not a "snake oil salesman", but it might be something
>you want to check into if you think the same connection holds true for
>you (no fibromyalgia BEFORE the tah/bso, but was told you have it
>shortly AFTER the tah/bso). If you want more info, please contact me. I
>have alot of resources on the subject that you can read for yourself.
>I'm still struggling with the endometriosis pain, but the fibromyalgia
>"like" pain is gone (thank goodness, I was ready to put my head in the
>oven).
>
>I wish you both luck, and pain free days.

Hi Angie, I have trouble distinguishing which pain is from which disease personally. The doctors showed me pictures of Endometriosis and I got a hysterectomy for it, but the truth is that the pain I had before is exactly the same now. I was never one to have heavy periods, in fact they were for only four days, and with both of my children, I had no problem getting pregnant. My doctor that just did the Hyst in January now says he won't prescribe me pain medication because its no longer a gynelogical problem, but nothings changed!!! I told his nurse that somebody's in trouble. I refuse to get all of my female parts taken out and now he doesn't even want anything to do with me. What a jerk. I trusted him with my life and he just shattered it. Anyway, I would like to try that natural hormone. I doubt it if it's going to help but why not give it a shot? It's seems that no matter what any of the doctors do, I'm bound to be in pain 24 hours a day, 7 days a week for the rest of my entire life. It's so unfortunate. Do you know are there any girls that have extreme pain 24 hours a day, or does it come and go? It's so hard because my legs hurt so bad that it really is hard to make it up the stairs. I wonder if its because I've been working on my feet for so many years. Who knows, I just wish everyone would just feel better for God sakes. Wouldn't that be a beautiful thing? Babble, babble. Have a wonderful day and good luck to you. Any tips on Fibromyalgia would be greatly appreciated. Wendi Farbstein >
>--
>===================================================
>At Sun, 25 Feb 2001, Wendi wrote:
>>
>>At Sat, 24 Feb 2001, LYNN,BASTIAN wrote:
>>>
>>>At Tue, 8 Dec 1998, anonymous@obgyn.net wrote:
>>>>
>>>>I had several lap surgeries to remove endometriosis and finally a
>>>>hysterectomy.
>>>>that was 1 year ago and also have Fibromyalgia. I'm in the dark on how
many of >>>>us there are, nobody really likes to talk about having either ailment.I
TO AM GOING THROUGH LAP. SURG. THURSDSAY MARCH 1ST...IF THEY FIND ENDOMETRIOSIS THEY WILL DO A FULL HYSTERECTOMY THEN AND THERE...YES I'M AFRAID , I ALSO SUFFER FROM FYBROMIALGIA. I'M NOT SURE WHAT TO EXPECT. I'M 29 AND HAVE A 10 YEAR OLD SON. IF YOU HAVE ANY INFO TO HELP ME PLEASE SEND IT ...THANK YOU LYNN 'B' >>>
>>>--
>>>LYNN 'B'
>>>
>>Hi Lynn,
>>Was wondering if you have any personal information you could give me
>>about fibromyalgia. I've researched it many times, but would like to
>>talk to somebody that actually has it. My rheumatologist thinks I may
>>have that, but I just don't know what to do. I also have Endometriosis
>>and had a hysterectomy on January 15th and am still in major, major
>>pain. Not sure. Anyway, have a great day, and if I can answer any
>>questions for you I will.
>>Thank you,
>>Wendi
>
>--
>adrite@hotmail.com
>

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