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Worst FMS flare of my life... Worst FMS flare of my life...

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Unread 03-04-2003, 09:09 AM
Thank-you sisters...

Your S and prayers are truly felt. I am starting to come back to my old self. After this, I felt like I had a really big hang over...very strange.

I've had FMS for years...have had some severe pain with it, as well as some mobility issues, but never like this before

Thanks again my friends
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Unread 03-04-2003, 10:34 AM
Worst FMS flare of my life...

HI Jude

Oh my you poor thing- I hope you feel better .......I just keep thinking that Spring is coming- have a nice cup of tea and maybe take a nap- that is what I am going to try and do. Sending happy and warm thoughts!!

Unread 03-05-2003, 03:06 PM
Worst FMS flare of my life...

ahhh Jude, I'm so sorry I'm so late coming in here but I seem to be battling some demons of my own the last little while!!!

I do know how you feel, one of the ladies at work's daughter's had her baby two days ago and as soon as she went into labour I got so so sad.....it wasn't like I didn't know it was going to happen (that she was going to have a baby) but all of sudden whamo.....I was just so sad that I was never going to get to do that and I too thought I was way past that........and I"m still totally in the dumps

as far as this FMS......I think you should tell your neuro asap it sounds scary as heck.....interesting that the endo flared at the same time, I'm sure there is a link there somewhere!!!

please know you are in my and I am sending the biggest 's possible my friend.....hang in there and know we are all here for you anytime!!!!
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Unread 03-05-2003, 07:34 PM
Worst FMS flare of my life...

oh sweetie, that sounds so scarey, PLEASE follow through on your promise with your DH, if that ever happens to any degree again. BIG S coming your way. I hope your neuro has some real answers to why this might have flared so bad or maybe so other resolutions for you.

in my thoughts and ers,
Unread 03-06-2003, 11:47 AM
Thank-you sisters....

I appreciate your (Hugs) and support so very much.

((((Gidge)))) I am so sorry that you too had to go through that. It is strange eh? I mean it will always be a part of me...and I will always 'ache' for the fact that I never will be able to have a bio kidlet, but I truly thought I was passed the 'big' part of dealing with the whole thing. I hope this was the final chapter. I will be seeing a therapist soon...so perhaps she can help me with this issue as well (I'm seeing her because I'm having a hard time dealing with this on-going pain as well as how some of my friends and family are treating me in regards to the pain). I'm sorry you are dealing with other 'demons'...if you ever want to chat, please e-mail me anytime sweetie

((((DLK)))) Thanks so much for your kind words. I will stick to my promise. I just got off the phone with my Rheumy's office and she was so kind. She said if this ever happens again (during office hours LOL) that I am to come in ASAP or go to the ER if it happens after hours or on weekends. I do plan on discussing this with my Neuro as well. He is usually really good at booking tests etc.

((((Karen)))) Thanks hun! I keep thinking about Spring too. This winter has been brutal. We probably have a foot of snow...with more expected in the next few days I know that I'll feel better once the warmer weather hits. I hope and pray you are feeling better dear sister.

The flare is pretty much over, except my feet are still really bad. They are so sore, that I can barely walk...have some swelling too I've been trying to do some exercises to ease the pain but they aren't working...oh well. I guess another hot bath is in order.

I think I have one smiley left...so here's a big for all of my sisters on the road!
Unread 03-06-2003, 11:50 AM
more hugs

I'm glad you are feeling a little better. hopefully your feet will also start to feel better too. I agree with all the others about not waiting and talk to your doc if and whne this ever happens. You are always in my prayers.
Love, Light, Blessings
Unread 03-08-2003, 07:35 AM
Worst FMS flare of my life...

I sure am sorry to hear of all you are going thru. I'm glad that you are going to be talking to a therapist. Several years ago they Dx'd me with FM. We realize now that it wasn't FM but rather MPS (myofascial pain syndrome). Some Drs link the two together and there does seem to be some relationship but the prognosis for MPS is much more promising. I've been fine since about 6 months after I retired from my job which aggravated my symptoms terribly.

Anyway, probably my therapist, an ACSW, was my greatest ally and healer. She introduced me to self-hypnosis for relaxation plus she was quite experienced w/FM and FM patients and fully realized what FMers go thru. Back then there wasn't the recognition of it that there is now and too often FMers were treated like hypochondriacs.

It is so wonderful that you have such a good support system: your husband, your Rheumy, etc. My ACSW also gave me the self-confidence to deal w/insensitive Drs. Restoring my faith in myself was perhaps her greatest gift to me.

Fortunately, I didn't have friends or family who were insensitive to what I was going thru. It really is best for you and your supportive family to cut those friends and family out of your life for the time being who are insensitive to or derogatory to your problems. Seriously. Cut them out of your life for now. Avoid them.

The endo pain is something that can be relieved, isn't it? Can't surgery be done to remove it and to give lasting relief? Forgive my ignorance about endometriosis. With FM you don't need the additional pain and aggravation of something that CAN be removed. Assuming endo can be relieved with surgery. Again forgive my ignorance about endo.

Perhaps a whole body WBC scan in the nuclear imaging department could detect all areas of inflammation in your body and those areas dealt with? It is a benign easy test. Two abdominal WBC scans have saved me from 1. a surgery and 2. several uncomfortable tests.

My heart goes out to you for all that you have to deal with. Good luck and God bless!
Unread 03-08-2003, 08:55 AM
Worst FMS flare of my life...

Dear CrohnieToo,

I want to thank-you from the bottom of my heart for sharing your experiences and giving me some really good information.

I look forward to seeing this therapist. I think it is something I should have done a long time ago. I was told by one dr not too go see one as my Insurance Company may then claim that all of what I've been going through is in my head - and not cover me. Probably bad advice, but I know he had my best interests at heart. You see I am on LTD. It started out as a short term leave from work because I was having daily pain from the Endo as well as a very bad reaction to Lupron (pre-hyst). So a couple of years later...here I am worse off actually.

I am so happy to hear that you found relief with your therapist. This "self-hypnosis for relaxation" sounds VERY intriguing, and I will bring this up with her. We've talked on the phone, and I like her already. As for her experience with FMS...I have yet to find that out. Perhaps she can refer me to someone, if she is not experienced in that area.

I LOVE that you said this "Restoring my faith in myself was perhaps her greatest gift to me." Those words are music to my ears. There was a time in my life where I actually found inner peace (sorry a bit of a tangent here LOL) and I had a lot of faith in myself. I had a great career that gave me not only incredible satisfaction but also a wonderful group of friends that felt like family. Leaving them was very hard, but when I have seen them on the odd occasion they make me feel as if it was only yesterday that I was working with them. I feel as if all of my illnesses have robbed me of so much (I guess in part I let it happen) but I truly need to restore faith in myself. PHEW! Your words really touched me, and opened up feelings I haven't had for a long time. Thank-you for that gift

As for cutting out the friends and family that are insensitive to my illnesses...I have done that - in part. I basically only have one friend...she is my best friend, and she has stayed by my side. She may not 'understand' how I feel, and at times expect too much...but along the way she is slowly learning that my pain is very real.

Sadly, the person that is the most negative is my Mum. When I try to talk to her about what's going on...or if she calls when I am having a really bad flare, she basically says that she just doesn't understand why I'm not better yet...and that I am obviously not trying hard enough to get better. I tell her that I am doing my best - and that should be enough. But I feel compelled to fill her in on all of my appointments tests etc., and somehow she manages to make me feel worse, and somehow uses what I tell her & turns it against me. I wish I could cut that tie, and at times I have for a month here...or a month there. But she is my Mum...and I do love her. If my Dad were alive I know he would understand, and be there for me. He'd be showing up on my doorstep with flowers...offers to drive me to appointments...a shoulder to cry on. You name it; he was the best person I have ever known. DH does have many of his characteristics, and I suppose that is part of the reason why I fell in love with him. Holy tangent Batman. I'm sorry to be so long winded here.

As for the Endo....well I have had numerous operations with little success - even after the hyst., I had a lap done where quite a bit of active Endo was found. The reason they don't want to do more surgery is because they say I have nerve damage in my abdomen....either from the Endo, or from the operations. I do believe that surgery will be in my future at some point. I can tell that the Endo is growing...and at times I feel the same pain that I used to feel when I had cysts....So we'll see...

Again, sorry about the novel here LOL! Your post really touched me, and made me open up a lot about many issues - that's a good thing in my book!

Thanks again for posting...I hope and pray you are well S
Unread 03-08-2003, 09:24 AM
Worst FMS flare of my life...

Sadly, the person that is the most negative is my Mum. When I try to talk to her about what's going on...or if she calls when I am having a really bad flare, she basically says that she just doesn't understand why I'm not better yet...and that I am obviously not trying hard enough to get better. I tell her that I am doing my best - and that should be enough. But I feel compelled to fill her in on all of my appointments tests etc., and somehow she manages to make me feel worse, and somehow uses what I tell her & turns it against me. I wish I could cut that tie, and at times I have for a month here...or a month there. But she is my Mum...and I do love her.

I'm soo sorry that your Mom is the one who is least understanding...have you ever tried to educate her on your problems? There is a wonderful letter made for families of FMS sufferers that describe how we feel ect... I will find it after I post this for you
I'm glad you will be seeing a Therapist. I think all Chronic Pain Patients could benefit from this. Living with pain 24/7 does take a huge toll on every aspect of our life. Learning to deal with it better is a big help..
I'm sorry your Dad is no longer here, he sounds a lot like my Mom. She was the one who made me seek out help for my pain, took me to Drs appts, was with me at every ER visit, her face was the last one I saw before each surgery & the first one I saw after recovery...I miss her soo much. There are days when I wonder how I will keep fighting this pain w/o her there for support. Yesterday was 1 year since Mom's untimely death
I didnt mean to vent my problems here on your thread ((Judy)), it's just I know you understand....thank you for that

It's nice to *see* you again, I'm glad to hear you got a clear DX & have found something that has helped you Thank you for sharing....
Unread 03-08-2003, 11:12 AM
Worst FMS flare of my life...

It really has to hurt that your mom is the least understanding. Of course you love her! But for your own well being keep your distance as much as possible and QUICKLY change the subject of conversation when she begins undermining you.

Actually, the advice you were giving about avoiding a therapist, isn't all the unjustified given the worms running the LTD insurance business. But there is a way around that. Ask your GP to make a referral to this therapist "for evaluation of a PHYSICAL condition which can affect your emotional well being and coping mechanisms". I actually was referred by a neurologist to a psychologist for neuropsych testing. She was a shrewed neurologist and the psychologist was an "arse". I decided to go to Cleveland Clinic, knew w/a possible Dx of FM they would probably recommend neuropsych testing as well so asked the jerk psychologist for my RAW DATA SCORES from the MMPI. My reasoning was that I wasn't sure my insurance would pay for a second MMPI, nor the value of having one done so soon after the first, PLUS when I want a HONEST second opinion I NEVER provide reports or some other doctor's opinion, only the raw data, i.e. the xray, not the xray report, the MMPI raw data scores, not the pscyh's final evaluation.

The psych refused to give them to me. By this time I really was somewhat freaked out and looking for a fight with anyone who wanted to give me one. (Was trying to quit smoking at the time on top of everything else). I took the shyster to court suing for my raw data scores and won. He even called in the state psych association to back him up. HA! They all ended up w/egg on their face because he DID have to give me, not only the raw data scores from the MMPI, but everything pertaining to me and my records in his office. The state psych assoc also found out that they are NOT above the law! Best $1000 I ever spent! We won on the technicality that I was referred for evaluation only for a physical problem that sometimes had a psychological component. And a patient's right to their medical records, of course.

I am so glad that you like this therapist already just from talking to her on the phone! I know I sure did appreciate my therapist. Almost hated to quit going to see her when I didn' need her help anymore! I count her as a friend as well as a therapist and drop her a letter now and then letting her know what is going on in my life. Its been about 5 years or so now since I last saw her.

I don't think that the therapist having experience w/FM is all that necessary but if she has lots of experience w/people with chronic illness and/or chronic pain so much the better. It is most important that you are comfortable with her and like her and have fait in her, her experience w/chronic conditions is perhaps somewhat less important.

Having faith in yourself is of the utmost importance with a chronic illness or in dealing w/chronic pain. Your therapist should be able to help you with that. Just remember: you do the work, all she does is guide you when you stray or are lost, helpsYOU to find the right answer FOR YOU.

Good luck and God bless and thank YOU for sharing with us! Sheri, you are very much appreciated as well.

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