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??? to ask dr, and neg. feedback for researching fibro
8 Replies
lorieholtz - October 28

this is probably to late to have put on here cause my appt is this morning. lol as usual i forgot to do this yesterday. but what i'm want to know is what ?? should i ask my dr about this fibro, since they don't seem to address it. what kinds of alternative meds, how do i get him to get it that this chg he did in my meds is just not working and that its not a drug seeking issue, but just some relief before i go nuts. idk just anything that u guys that seem to have alot more knowledge than i do. any help would be greatly appreciated. today i get injections in the bursa of both hips so i'm not really going to have alot of time to chat with him but i do have another appt with him on nov 16th. so i can talk more to him then.
also for those who i have spoken to in the last few days i went to the counselor yesterday and i really liked her. i told her of the addl stress i've had since first of aug. and she said u realize stress really helps to flare up ur fibro, so we are going to work on that issue.
also something that is really bothering me and that is from someone i really respected gave me heck for getting on the internet looking for answers. it really bummed me out to the point if felt rage and normally i never feel like that (rage). she also said thats all i ever think of is my pain. it made me feel so selfish...maybe she's right idk anymore. but dear lord i feel this pain 24/7 and it is becoming consuming. plzz give me your thoughts and its ok with what ever u might say i can take it.
thanks to all


ptalana - October 28

Hey lorie, it's so easy for someone who is not experiencing this all consuming pain to not only understand, much less not judge!!! I know this reaction is one of the reasons I love this forum, I can be myself, vent, ask for advice without being judged. It really hurts when someone we respect says something so negative, and to feel selfish for being an advocate for your self!!! I can relate, sometimes I can hear the rolling of the eyes when just answering the question "how are you feeling"on the phone. And when I don't answer honestly and say I'm feeling o.k all of a sudden it's like, "great you're better" (not).
Sometimes I honestly feel guilty for having this pain.
Have you had these injections before? Do they help with the pain? I've been waiting for months now to get nerve block injections started. Recently my costochondritis has been insane, it hurts to even breathe. I wanted to try to handle the pain without aid, but it's not working!!! Doctor suggested anti inflammatory for this, guess I'll give it a go (fingers crossed).
I'm glad you like your counselor, it's great to have a comfortable relationship with someone you discuss your innermost thoughts and feelings with. Bravo for taking that step!!!
Hope you have a super day, Patty


brooksidefarm - October 28

lorieholtz - Hi! A couple things for you. First, pray. If you do not know God, do not be afraid to ask Him if He is out there. Let me know if you need guidance. Next, do not let someone who does not feel your pain make you feel guilty. Anyone who really loves you would not say those things, and though that is difficult to face, do it now, and surround yourself with people who understand. Third, do not stop doing research, talking and asking questions. Anyone who puts their body and life in blind control of another person - even an MD - is not acting logically. The internet is like anything else. You must check your sources and double check information, but what an amazing tool. One thing that I did and I tell others to do, is go to WebMD and run the symptom checker. If you do the detailed one it takes awhile, but will come up with results based on your answers and is a good conversation starter with your MD. If the MD scoffs at you, find a new one. Ask him if he would not research exam results of his own? If he says no, he's an ass. There are MDs who want your health, and not their ego built up. If there is not time before your appt, do it later and fax your findings to your MD. This condition seems to control us, but I think if you take control of what you can, and are proactive about things that are on your mind, it becomes a bit more manageable. God bless.


lorieholtz - October 29

ty u both patty and brook
the support in here is absoulutley unreal and i so appreciate it. yes i so believe in god and without him i wouldn't be here. the injection in my hips yesterday went well. when i did sleep they did hurt. now can i have that shot all over lol. that person i was talking about was my sponsor and i realize that she only gives conditional love cux i've failed in the drinking dept at the moment only cause of the pain that i just can't deal with. yesterday i became so angry just thinking about what she said. few ppl that do love me says i need to walk away from her right now at least, for my own sanity. then of course i let my drs know bout my drinking. so he will not increase my meds due to it ... i've screwed myself. i'm not drinking anymore right now then more than likely lots of those out their on meds. u know like 2 glasses of wine in the evening, or couple beers. but because i've admitted to be an alcoholic than..... i'm not angry with my dr i do understand. yesterday they want me to go to a rhumy dr..i think thats great i wish i had been told this yrs ago. i spoke to him about fms and he said i def have signs of that but, there are many things that can imitate fms. brook i will take ur suggestion and go on wbmed and do that... lol just another site according to someone i won't mention lmao. u know i've got to find laughter again.. i so remember laughing alot and i mean alot. now i really have to think when i last laughed. they say its such a healty thing to do and i do believe that. i'm not sure if i've put this out but i've decided to try and do some volunteer work and waiting on an app from this place that is a senior citz. day place. right up my ally. i'm so looking forward to this, but i did explain to them my issues and not always dependable and could not do many hours, but that didn't seem to make a difference to them. god bless em cux if they take me it will be such a blessing and maybe i'll have some sort of self importance back into my life. you know disablity is not what its cracked up to be. you don't know how many ppl say omg ur so lucky (being on disablity) and i say "lucky" you've got to be kidding its a life of hell.
once again ty u both.. god lead me to this site


Fantod - October 29

Hi Lori - I'm glad your appointment for the tigger point injections went well. It is going to take about a week before things start to settle down. You might also ask your doctor for the Flector pain patch. It does NOT get into your system, it only works where it is applied. That helps me out a lot shen I have areas like my shoulders or lower back that are making me nuts.

Sorry I could not get back to your sooner. I had outpatient bilateral foot surgery yesterday and I was fairly busy prior to it. I'm doing pretty well today, thank God for Darvon. And that I can tolerate it - I have so many chemical sensitivities it isn't funny. I'll be off of my feet for about 10 days. And about 6 weeks to full recovery. I love my orthopedic shoes....

I'm on disability too - was just approved. I know exactly what you mean about the stigma attached to that. I'd rather be "unlucky" and have some of my old life back. I keep busy on bad days with genealogy through It helps me ignore my pain issues especially at night.

You know, your sponsor is supposed to be disappointed with you right now. It is not easy to be a sponsor or be on the receiving end of their observations. I strongly disagree with giving your sponsor the boot. They are doing the correct thing and I think given some time, and postive progress you'll come to agree. Certainly, no one can appreciate what you go through with the chronic and severe pain issues that you experience but nonetheless they have your best interests at heart. And, I think you'll realize that once you can get past the hurt and embarrassment. Small steps equal success.

A rheumotologist at last - about time. Be sure you get someone well versed in Fibromyalgia (FMS). You might want to go online to the National Fibromyalgia Association website and register. Then you will be able to see a list of fibro-friendly doctors in your area. Get copies of any recent bloodwork/tests and your medical file to save time when you go. You also might want to consider taking someone with you so they can listen to what the rheumy says. Sometimes two heads are better than one when dealing with a stressful situation.

Humor is very imporatant when learning to peacefully coexist with chronic illness. I like your idea about doing some volunteer work. I've thought about it but I am also not dependable. I kind of consider contributing to this site as a volunteer thingee. I also do little research projects for my Mom and her friends. They are all in their 70's and 80"s and some of them do not have computers. I've been designated their offical research guru I guess.

I'm really pleased with your progress this week. You saw a counselor, talked to your sponser and are going to see a rheumotologist. Thats a lot of ground to cover in a short time. You deserve another Gold Medal in the FMS Olympic games for being so brave and tough. Keep going, we are rooting for you. Keep in touch. God Bless.


lorieholtz - November 11

ty for ur comment and another medal lol, and i hope ur doing better with ur feet and that ur healing well. i think i forgot to meantion to u something my sponsor said to me before i ended up picing up that drink and that was... u know what will kill the pain don't u and i said what and she said a few stiff drinks of vodka. no kidding at all she responded like that. so really i'm not sure she is the appropriate one for me. also i'm not drinking now, but nor am i going to the meetings. my sis who is a nurse and specializes in behavioral is very irritated that a sponsor would put that sort of a trigger in someones mind such as that, plus i never drinked liquor lol. i've been trying to get things bk to somewhat a normal level as possible, but the pain just beats the heck out of me. i love laughing and joking and i'm trying to find the humor in all of this cux i feel that can be quite healing in itself. are u completlely off of ur feet right now??? i must say since i got those injections in my hips my feet pain has been so much better.
i think its great that u help her mom and her friends in this electronic world cux its hard on them trying to figure this all out. sheesh i have a hard time to and i'm not in my 80's lol lol
hope this finds u doing well.


Fantod - November 11

Hi Lori - Obviously you need to get another sponsor. What a thing to say to someone struggling with addiction. I can't even imagine what her thought process was in coming out with that comment. No matter, it was totally inappropriate.

I'm doing pretty well with the feet. I can be up for 15 minutes every hour and the stitches are out. I'm actually having more trouble with them since the stitches were removed. That's typical for me. I usually have problems about 10 days after a procedure - you can set your watch by it.
I actually drove yesterday which felt kind of strange after being a shut in for days.

I'm glad you have some humor in your life. I think it is an important balance especially in the face of so much aggravation.

Take care.


Canada17 - November 11

Dear lorieholtz,

I think the reason your friend gave you heck for getting on the internet to look for answers is because you have to be very, very careful. It is easy to get caught up in the "I cured my Fibro with these five easy steps.." stories. What I mean is that there are a lot of people out there who will take advantage of those of us who are desperate to find relief. Not everything you read will be right and true, you have to learn how to filter and cross reference in order to determine what is good information and what is useless. Unfortunately, there is a lot of useless information out there.

Getting on the internet and looking for answers is not the worst thing you can do. The worst thing you can do is ignore your every instinct to understand what is going on with your body. To take just what your one doctor tells you, who you seem to be having trouble with, as the be all and end all to your recovery.

You say that she said all you ever think about is your pain. Perhaps she feels overwhelmed by the fact that talk to her about your pain so much. I would suggest explaining to her that the reason you express yourself to her about your condition is because you respect her and you need someone to listen to you and help you. It can be very hard for people who don't understand to believe that the pains you feel are real and you're not exaggerating them or fabricating what you are feeling. You are not selfish for wanting to talk to someone you trust about something that is such a big part of your life.

Sometimes when people give us a hard time about something, it may be something that is bothering them but there are usually other things going on in their life and you may have caught her on a bad day and she just happened to vent it on you. If you can have an open discussion about why you talk to her about your pain, hopefully she will understand why you go to her to discuss it. If not, then maybe she isn't the friend you think she is.

As for your doctor, ask him to refer you to a specialist, a chronic pain doctor, a rheumatologist, or even a physiatrist. If he is unable or unwilling to address your very real fibromyalgia then he isn't the right doctor for you.

I had a doctor who continually told me, and my other care providers, that it was all in my head and suggested that I see him for hypnosis and therapy. I knew he was wrong, when I found out what he was telling the other doctors, I discussed with them what I had been telling him and we all agreed that it wasn't in my head. It turns out my doctor just wanted to get more money for the treatments he could provide and it had nothing to do with treating me properly. I dropped him like a bad habit and was without a doctor for four years (finding a family doctor in Canada is near impossible) before finding someone who could recognize what I was dealing with. Now I have a diagnosis and am on the way to learning how to cope and manage. It just wasn't worth fighting with him. We need doctors to fight with us against our FM, not against us.


lorieholtz - November 12

ty all for ur comments,
well the thing is she would ask me everytime i would call how i was feeling, so i would tell her.. my mistake lol. but seriously though when ur in AA u r supossed to talk about anything that could jepordize ur sobriety. funny thing is even at my worse there for awhile i had absolutley no desire to pic up a drink. god had answered that prayer. but after being on that cymbalta and it was chging me drasticly little by little and then the comment of how to get rid of pain it seems like thats all it took. i really think in my heart that if it hadn't been for that cymbalta i wouldn't had pic up one. i saw somewhere else where several ppl said they had my issue with alcohol and when on cymbalta they lost their time of sobriety. its terribly sad if there is a true connection with this, but i know now that this has not only happened to me. today i can say that i do feel much better when it comes to withdrawls from meds and boy it really makes me think twice on what ever might be suggested in the near future. right now i've not talked with my sponson in over a wk and i see where she called while i was napping yesterday. i think i'll call her bk today, but i do think i'll never be able to talk with her like i used to and thats not good. i sure do hope soon that i can get away from this house cux the longer i stay in the longer my reclusing get stronger and i need to somehow take back some control.
as always ty for ur support



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