I have suffered from terrible pain for six or seven years now. It never stops. I have days where it is bearable, and days when I cannot even function and have missed a lot of work. Only recently have I looked into the possibility of Fibromyalgia. I want to discuss it with my doctor, but don't know where to start. I just don't want to be labeled again by the doctors and just being told it is all in my head.
A lot of people go to rheumys or neuros, but I never liked them. Where you go is up to you.
Just be assertive and ask your doctor if fibro is a possibility for you. If he/she isn't open to discussing it go to another doctor until you find one that will listen. Any doctor that lets you think it's all in your head isn't very good and would not have my respect. When they don't have a clue that's the answer along with eat healthy, don't smoke and exercise. What a crock!!!!!!!! You're going to have to be patient while you're looking, but there are very good ones out there.
I go to a pain management specialist and I love him to death. He does meds and is not afraid to use morphine if needed, but also does nerve blocks, ablations, puts in stimulators, etc.. He is very serious with the medications and you don't get prescribed anything over the phone to a pharmacy. I've had the alternate procedures done and it's great. Sure I have pain and flares, there's no one that'll take it all away, but for the most part it's a better quality of life.
Keep your head up high and stick to your guns. You hire a doctor just like you do a plumber, remember that. Don't let anyone intimidate or humiliate you. The more you know about this disease the better. There's all sorts of sources to find out more things about this illness.
DeBeachSiren - Wonderful reply... You are giving wonderful information... When I first started, my first GP said I needed to go to weight watchers as he needed to also but that I was a beautiful woman and he was to touchy feely if you get my drift on several occasions and asked questions he didn't need to be asking, I even took my husband in there as I just couldn't believe his behaviour... I was sexually assaulted by another man so I finally picked my head up and walked out of his examing room screaming at the top of my lungs what a pervert he was... Now he is in a lot of trouble and getting ready to lose his license, not by me but alot of other patients , sorry for rambling there... Anyway, I found a new GP, who was sure I had fibro and sent me to a neuro who did extensive testing and did find that I had fibro, hypermobility, some scoliosis and flat feet but he wasn't the type that would treat it, only diagnose... So back to my new GP... He was trying his best to treat it but nothing was working and he really wanted something to help me... So he started sending me to different rheumies and neuros... I explained to one that I noticed my symptoms got really bad after I had been a workout nut doing Advanced TaeBo, 1 hour a day and then riding my bike for 12-14 miles per day after that, and would do this every day... Even my doctor said at that time I was addicted to working out and needed to cut back... I knew something was wrong with me a couple of years before that but after doing TaeBo for a couple of years and getting into the Advanced workout, my hips really got bad... I am telling you this because one of the rheumies that my new GP sent me to evidently only like patients that had been in car wrecks and when I got into the examining room he asked when I noticed that the fibro got worse, when I said something about the advanced TaeBo, he told me to go home, and get back to the TaeBo and it would work the fibro back out of my body... Yeah right... My GP, Bless his heart, tried two other docs and then finally said, I am sending you to my pain management doc. That was back in 2004. He was a nice guy and then came the news that he was retiring . However, he had someone that was taking over the practice. That can always be good or bad... The nurses and staff would be staying on and they are wonderful however they told me that the drug seekers would be weaned out because the new doc would not put up with it. They also said that the patients that were "good" patients, that the retiring doctor would be introducing to the new doc personally so that he would make sure they would continue to receive the care that they needed. I was one of the few "good" ones. The nurses said there were not many. They considered the good ones as the ones they never had to do pill counts on or urine test or "lost prescriptions" and things like that.
So it is like DeBeachSiren said, keep looking until you find one, I didn't think I ever would and then, there he was. For the first three years they didn't even accept my insurance so I had to pay cash and then when my husband was in surgery last year, the receptionist called me on my cell phone and said, we now accept your insurance and I am back dating it for two months and ended up getting back close to $400 dollars. She didn't have to do that, so you see, there are good docs out there.
And for the first doc who said I needed to go to weight watchers, I got really sick with some gastro stuff and ended up losing close to 70 lbs., not the way to lose weight but hey, I lost it and he didn't.
You will find a doc who does believe in fibro and will take very good care of you in a way that is best suited for you whatever that may be. Keep your head up and look until you find him/her.... Jenn
My oh my, I've never heard of a fibro patient being assaulted in such a manner by a doctor. What nerve! This is why I always complain about the lack of professionalism in any professional field (teachers, cops, lawyers, DOCTORS). Jenn, I am terribly disturbed to hear your story, I'm so sorry you had to go through something that despicable, and wish you all the best!
Like others, I would stress patience when being a patient. This can be hard though, much easier said than done. I've seen 5 different doctors in the last 2 months. Not one of them has believed me at all, or even attempted to help in the least.
I complain about fatigue -- they give me an anti-depressant and tell me to go away. I complain about sleep -- they give me an anti-depressant and tell me to go away. I complain about anxiety -- they give me an anti-depressant and tell me to go away. I complain about pain -- you can see where this is going.
If I ever figure out an answer to how to deal with doctors as a fibro patient, I would be more than happy to share it. In the meantime, I'll keep trying my best.
I as well suffer with plenty of fibro symptoms yet not diagnosed. It's frustrating. My most chronic pain is my neck and shoulder, but I have other joint pains. It's horrible. And just like you SD83, my doctors think anti-depressants are the answers to my physical problems. I'm beginning to think my doctors are making me depressed. Just today, I resigned from my job. I was depressed that I did it but I had to because of the kind of work I do. I am confined to a desk on the computer, right handed at that, so the repetitive movement with the mouse and keyboard aggravates my chronic neck & shoulder pain. I was denied short term disability so I just quit. Not a good time in these days to just quit a job when others are seeking one but I couldn't bear the thought of going back and being confined for 8 hrs a day. I get very bad neck spasms that make me want to cry. I am undergoing physical therapy but I still get pain and spasms, especially the night after my therapy. I can't find a doctor who specializes in fibro here in Florida where I live. It's so frustrating.
Last edited by mod-anon; 11-24-2008 at 12:04 AM.
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First of all I am so sorry Jenn that you were violated like that by someone you're supposed to trust. What an awful experience. Keep shouting to the rooftops until that poor excuse for a person is in prison like he belongs, he may learn about unwanted advances himself. I believe in stretching......a lot! I do get awfully sick and tired of hearing the exercise thing. Wow!!! What a dolt.........does he really think you can exercise the fibro out????? I wonder sometimes if some of these people got their degrees from the places advertised on books of matches. I think that during college there should be a class on compassion and they should have to do it every now and then to keep their licenses. I'm so glad that you've got a good doctor that you can trust now.
I truly believe that anyone with chronic pain has depression. You've got to keep looking around until you find a doctor that believes you. I'm tired of the whole "here's a pill thing". Pain management doctors are best I think.
Watch out for all the quackery that's out there too. Fibro people are prey for so many things. We'll try anything just about. I've written before that if you thought wearing a chicken around your neck would help you'd do it. There is such a variety of things that people swear by on here, some I've tried.......but the best thing is that you get so many views. It's okay to agree and disagree. The treatment that was the most horrid 2 years of my life was the guifenisen (Musinex) (I know it's spelled wrong) cure. Everyone's different.
I also have most of my pain from the waist up, especially in the neck and shoulders. I had headaches from nerve entrapment everyday. Bless his heart, my doc did all kinds of procedures and they didn't last or work for me anymore. 2 years ago this month I had 2 electrodes put into my head and connected to a stimulator, the battery is in my lower back and the wires got up into my head. It worked and has given me 80% relief of headaches. So there's doctors and things you can do for pain, you just have to find them.
After your physical therapy try rolling back and forth or side to side on a cut up pool noodle or tennis ball. Right now I'm using my laptop with pillows behind my back pressing and rolling on a pool noodle between my shoulders.
Last weekend I went to the smal ER twice in one day. My muscles spasmed in my neck, between shoulders, around my stomach and in my ribs. Mostly it was on the left side. The 1st doctor at the little ER was a jerk and after a few minutes I looked him in the eyes and said why are you talking to me like you are and talking down to me. I don't come in here all of the time wanting drugs for pain. I need something that's going to release these muscles. Then he got his glad rags on and acted nice. He gave me 2 valium and sent me home hoping that that'd relax me enough to work cause he finally said he's never run into anything like this before. He should have said that in the first place and we could've worked together, but he had to play the almighty god doctor. I don't get intimidated, it isn't acceptable. Later I went to the hospital ER this time the muscles were so tight I couldn't even keep ice down, my stomach and ribs were so tight. I have a very high pain threshold, but couldn't take it anymore. They put me on fast track because it was hard for me to breathe and soon I had an IV in with pain medicine, ice chips, an anti-nausea pill and they gave me 3 doses of valium in my IV over 3 hours and the spasms finally let up. That really kicked my butt and took several days to get over it.
We all have bad times and flares, but we can come on here and someone will help you out, even if it's just reassurance. You know that someone understands.
I would write down a list of my symptoms and take it to my appointment with me. Then I would ask the doctor if they are familiar with Fibromyalgia. If not, then ask for a referral to one that is. If they are, then I would ask them to check me for the tender points used in diagnoising FM. I have had it for years but was only recently officially diagnoised. If a doctor ever told me something was in my head I wouldn't go back to them. A doctor should never tell a patient that. Any doctor that does that isn't much of a doctor if you ask me.
as some of you are, i'm about ready to give up on doctors and trying to find a diagnosis. i left my rheumatologist office yesterday afternoon (voted the "top doc" in the city, which is an award given every year to doctors in every field of medicine here) and i was in tears. top doc my a**. i had no diagnosis, no different pain med, he challenged everything i said and answered my questions with questions, and is sending me back to the pain and spine clinic convinced that everything is coming from the mild disc bulges in my upper back and the herniated disc in my lower. the spine surgeon disagrees with him. this rheumy wouldn't even change my NSAID, after asking him twice. for me, it's voltaren or nothing, because he says so. as for my other symptoms, he dismissed them because "the neurologist found nothing wrong". therefore, there must be nothing wrong. silly me. that's why i can barely function some days, and am having a harder and harder time just trying to find motivation to get out of bed in the morning. no doctor wants to take ownership of me and my pain! and the pain and spine (pain management) doctor can't see me until january!!! WHAT AM I SUPPOSED TO DO FOR ANOTHER TWO MONTHS??? getting second opinions is all well and good, but how long will it take to get in? many more months. i am so angry and feeling sorry for myself right now. thanks for letting me vent. lily
Lily... I am sorry you are having such a hard time right now... Hopefully you will find relief soon... Is there not another pain doc anywhere around that you could get into before January? Vent all you want, that is what we are here for... I have an appointment early in the morning with my pain doc and its another round of trigger point injections, I am hoping they last longer than last month... I am having a major flare up on my right side especially in my tail bone and hip and then it goes with out saying my neck and shoulders, they never quit flaring. The meds don't work well anymore and on top of that, it is raining and is supposed to rain the rest of the week and the temps are dropping, not good weather for me. I just want it to stop. Just for a minute. Sorry I rambled there but body is not working well today. I know I will get my shots tomorrow and then the knots will come up and I will be on the heating pad to get them down. What a wonderful day tomorrow will be.
Anyhow, I hope the rest of you have a pain free day... Jenn
thanks for your kind words. unfortunately there isn't another pain doc i could see before january. i have to see the same one, according to my insurance, and that's fine because i liked him. if i try to see someone else, as a new patient appointment it will probably take longer. i am going back to my pcp to beg for help and advice. he will probably give me a pain med to at least get me through until january. will you please tell me a little about the injections you are getting? I am seeing a myotherapist and i don't know where i would be if i didn't have that little bit of relief. like you, i don't feel great the day of treatment, but it does seem to help from week to week. what other meds were you taking that you said aren't working anymore? all i've had is naproxen, advil, and xanax for the stress and despair that this has all brought about. good luck tomorrow with your injections, and hopefully you'll be able to endure the discomfort a little better knowing that some relief is just around the corner. lily
I went to my new doctor and we did all of the bloodwork (which of course showed nothing, of course I could have told them that). And I got started on some medicine that is supposed to be good for longterm treatment of Fibro. I can't recall the name right now...but I'm willing to give anything a try. I also have some Darvoset to help me right now until this new medicine starts to work. Then next week we're going to have a discussion about other treatments and longterm what to expect and etc. etc.
So far so good. I hope this good streak continues. I might have finally found a doctor who is willing to listen.
I'll try to keep you all updated.
Thanks again for all of the advice. Because I went in educated she seemed more than happy to listen to what I had to say.
great news for you lizard! if you would, will you please post the name of the med that you were put on. i have to force feed my doctor information that could be helpful to me! half the battle is finding a doctor that will validate what you are saying, take you seriously, and treat your symptoms, and it looks like you found her. i'm so happy for you! Lily
The medicine my doctor is trying is Amitriptyline. It is an antidepressant that is supposed to help Fibromyalgia as well. I won't know probably for a few weeks (when I get up to the full dose) on how well it is going to work. I'll try and keep you all updated as to how effective it is. I'm willing to try anything they can throw at me if it will possibly help.
Last edited by mod-anon; 11-15-2008 at 12:14 PM.
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will you please tell me a little about the injections you are getting?
There are quite a few people who don't really agree with them but I get trigger point injections that contain lidocaine and benzodine, they do not have steroids in them. My pain doc gives them to me every 28 days or sooner if needed. He gives them to me in the trigger points in my neck and shoulders and in my lower back on either side of my spine and further out. Shots do not bother me but I will tell you, these hurt like hell. I usually get anywhere from 6-10 shots every 28 days. If by chance I need some earlier, it would be just 1 or 2 usually for my shoulder. Once he has given me the shots, there is a little nodule type thing that is warm that is placed over each injection, this allows the meds to go further down into the skin. There is always a chance that the trigger point will roll out of the way once he starts the injection and then that shot was a total waste but I think we do what we have to for the pain. Wherever I get an injection, it usually swells up and I then have to drive home hoping I will not hit a bump and drop off my scripts at the drugstore and go home and get on the heating pad and hope the swelling goes down somewhat so that I can go back and get my meds. Sometimes they work for 2-3 weeks and sometimes for 2-3 days, its just the chances I take to feel a little bit better. HOWEVER, The night before my doctor's appointment, I had to take a shower which is a major undertaking for me, I was shaving my legs in the shower and one of my hips and legs is giving me lots of problems and wham down in the shower I went... I was so damn mad that I laid in the shower crying not thinking that the shower was still running, my husband came in the bathroom and said are you okay and I just kept laying in the tub bawling with the tub filling up with water... By the time my husband got me up, I was choking on the water. I felt so helpless at that time. My husband told me I am not allowed to take a shower unless he is at home. That's great, he works from 7am until 8-9pm and starts drinking as soon as he gets home... so, I took a shower earlier today and I didn't fall...
what other meds were you taking that you said aren't working anymore? I shouldn't say they aren't working at all anymore, I think I have just gotten to the point that there is only so much I will take.... I won't even take all the pain pills or muscle relaxers my pain doc gives me. Its not just because of the type of med they are but I have to take so many meds due to other issues that it just gets old... I take the following meds for fibro: lortab, robaxin, mobic, neurotin and trigger point injections: for migraines: topamax: asthma: advair for BiPolar 1 and anxiety: seroquel, lamictal, xanax, and he gives me ritalin for energy... then I take 4 things for gastritis, IBS, divirticulosis and then I do take asipirin due to the TIA strokes I suffered back in 2006. I am sure there is another med but I don't have my med list here in front of me. There have been so many other meds they have tried me on that I can't remember them all. I do know I have been on cymbalta, lyrica and several others that really didn't help but everyone is different.
I know that everyone has their own path to take to find the most pain-free days and that is what I wish for everyone. All we can do is be here for each other for whatever that need may be. Thanks to all who listened as I know I started rambling, which is something I do that cannot be helped... I just had to get the shower incident out. I wish you all a pain-free day. Jenn
Last edited by mod-anon; 11-24-2008 at 12:06 AM.
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