As I am typing this, I am in a significant amount of pain. It took me 3 years to finally get a diagnosis. My PCP put me on hydrocodone, and just took me off of it without any warning.
Once I got my diagnosis from a rheumatologist, he said he doesn’t treat Fibro and that my PCP would treat it. My PCP told me that he has never had a patient with Fibro and there aren’t many specialists in this area.
What am I supposed to do then? By any chance is there anyone in the KCMO area that has a recommendation for a doctor who can actually help?
I’m sorry to hear you going through all your pain. It’s not easy and I can imagine the pain your going through. Just before I got diagnosed I use to go to the Emergency Room if it got so bad that I couldn’t handle the pain. How can your rheumatologist not treat fibro. (rheutorical question). That must be so aggravating to have a rheumatologist who is willing to give you a diagnosis but then says he doesn’t treat fibro. PCP’s don’t usually treat fibro from what I’ve experienced. I’m surprised your PCP put you on hydrocodone while also saying he has never had a fibro patient. My rheumatologist put me on Lyrica. 150mg every morning and that has helped my symptoms immensely. Your PCP’s office should help you find someone. What is KCMO? Is that Kansas City, Missouri area? I’m from Massachusetts and just want to clarify in case there are any other members around you. There are a bunch of good people on here who give excellent advice. Has your PCP’s office tried to work with you on locating someone who could help you? I hope someone has an idea for you.
In the meantime you can try checking out some of the other members stories and what has worked for them. You may find something useful.
Thanks so much for your response. It has been a long road for me, and while I do think my PCP has been trying to do the best he can for me, I don’t think he is knowledgeable enough in this area to do so. I have an appointment with him again tomorrow, so hopefully I can get more answers.
He had treated me with hydrocodone for my TMJD, which is what I was diagnosed with first, before they believed me that it was all connected somehow. Then they thought possible Lupus because I have two other autoimmune diseases, and he put me on 50 mg of prednisone per day, which made things much, much worse.
I am now off of the steroids, and taking Cymbalta daily. (the generic form though) I’m wondering if I should try Lyrica next. I’m confused about what pain medication is safe for Fibro patients. I definitely do not want to become addicted or dependent, however, I also don’t want to live my life in excruciating pain each day. That isn’t much of a life to live. Hopefully I will get more help tomorrow.
KCMO is Kansas City, Missouri - I should have typed that all out earlier! Was in lots of fibro pain, so I was typing quick sentences. Thank you for reaching out. Sometimes it is just nice to talk to someone who can understand. I’m glad to hear that Lyrica has helped you. I think I will mention that tomorrow.
The rheumatologist stuff has been extremely irritating! I have seen four now. The one who finally diagnosed me won’t treat me, and the others were so condescending I won’t go back. I keep saying I just need a doctor who I can trust.
Your entirely welcome. I think it’s great your PCP wants to help but he really needs to send you somewhere who can help. This is your life so if the Rheumatologist isn’t right for you try to get another. I’m sorry your dealing with a bunch of things. It can be hard to deal with things on a daily basis. I know that all too well.
I use to be on Cymbalta but my PCP took me off it and all her patients because she didn’t like the side effects. My partner was on it and once changed to a different medication he wasn’t as depressed. Cymbals can make you more depressed but it doesn’t do that to everyone. Lyrica works for me and I know if I miss a dose I’m in for a world of hurt. Prednisone is rough too. I had 2 organ transplants and was on high doses during those times. I’m now on a baby dose. Pain medication is safe in low quantities for instance if you’ve never had it they would start you on a low dose. That can be enough to help. I’ve been on oxycodone for 3 or 4 years I think. It helps but somedays I want to sleep. I have been on hydrocodone before too. I just remembered your on that lol. Good luck tomorrow! You are welcome to chat with me anytime you can even go to my profile and private message if you’d like. Doesn’t matter to me. Keep after those Dr’s for better Dr’s. We will chat soon
Hi Sarah,
You’re lucky that your PCP is at least willing to work with you. My primary care doc thinks that Fibro is a garbage can diagnosis, and I’m breaking up with him because of his condescending attitude. You can probably stick with your primary care doc, and just educate each other as you go along, using yourself as the human guinea pig. Honestly, I haven’t really gone the daily medication route like Savella, Cymbalta, etc yet. They just didn’t have that much of a success rate that I was willing to try it yet. I was on different drugs for depression, pain, and chronic daily headache prevention, and they did nothing.
Stuff that didn’t work for me: Amytriptalene, Nortriptalene, Zoloft, Wellbutrin, Malbec, Diclofenec. Numerous meds for sleep.
Meds that kind of work: Tramadol for pain (not every day, and it’s only mildly effective), Trazadone for sleep (somewhat effective, but not great), Topomax to avert the daily headache (it’s stopped working). Over the counter stuff - Advil, Tylenol, as needed.
I’ve found that quitting my job, changing my relationship, moving, and saying “No” to requests (“Can you coordinate the potluck for the blah blah blah?”) has helped more than any medication, but that’s not always feasible. To muddle through, Netflix, a heating pad for my body, an icepack for my headaches, and a fan blowing on me at all times is really nice. Plus I make celery and peanut butter for dinner a lot with a fine vintage Gatorade (seriously, that is my favorite meal these days. It’s a weird side effect to Topomax! I crave celery and Gatorade! I’ve lost 35 lbs with this drug!).
Hang in there, and I hope you can find a doc who will support you.
Hahahaha - same here! I have a heating pad on and an ice pack as I type! And about to Netflix and chill
The appointment today went better than I expected. He agreed to stick with me and we basically will help each other learn about fibro treatment, kind of like you said, KillerTomato! It was so nice to hear that he would try to help find something to work. He wants me to try Lyrica for at least 6 weeks. I am so hopeful it will help!
I think I may need to research Topomax… a 35 lb weight loss isn’t a terrible side effect… haha
Thank you both for responding - It helped more than you know! Fibro can be lonely at times, that’s for sure!
That’s amazing your doctor is going to do that. It’s pretty positive and I’m happy for you. It’s a step in a better direction. Yay I hope Lyrica works for you. I’m really really excited for you. This made my day and trust me I did absolutely nothing today and was upset about it.
That is great Sarah. For me, I found that minimizing stress as much as possible and getting adequate sleep (of course neither of these things are easy and I do not always succeed) help. Another thing was I found a physical therapist who was familiar with Fibro and was willing to move slowly. I did a few weeks of visits with exercises that o could do at home which were gentle. Seemed to help after sticking with it for a while. The thing I have learned is just never give up and keep trying and advocate for yourself. Hugs.
Awww, thank you, David! It definitely made me feel hopeful again, which we all know we can’t lose hope or else we’ve lost the fight. Still scared though, because I’ve been given false hope so many times before. I’m so appreciative of your support! I can tell you are a very empathetic person - I think we have that in common
Thank you so much - I am thinking of trying yoga soon. I find doing housework to be incredibly painful, which embarrasses me. I need to figure out what the balance is between too much and too little movement.
Can I ask - do you all work? I am an elementary teacher, and I have always loved my job so much. But I have to admit the fibro makes it incredibly hard to stay positive and happy for my kiddos, which I think is imperative for classrooms. I do my best to work through the pain, but some days are harder than others. I start at a new district this year and I am so nervous.
Your welcome. Yes false hope is not fair. I’ve had that from doctors in the past. I’ve been dealing with doctors for 22 years (wow that’s insane) and I don’t have that much problem anymore because I have learned to speak up and if something isn’t going right I make sure they know it. I don’t have the patience anymore for doctors who won’t do their job. I would make sure you keep your doctor accountable so if they start to veer off the fibro talk I would be like “what is wrong with you” lol. I know what it’s like to go through health issues and I feel really bad for people who are dealing with issues like your self. I live about 40 mins from Boston, MA and I’m very lucky because there are several good doctors out there. I’ve only said once that I don’t want a specific doctor doing one of my surgeries because of his bedside manner. He was the chief surgeon for the endoscopy department at a major hospital and I didn’t care because he was a jerk lol. Yeah I’m pretty empathetic.
I hate housework. I’m sure the kids will like you know matter where you get shipped to. Its always nerving to go somewhere else but it can be exciting too. Take one day at a time
Hi @SJB. My name is Debbie, and I am new to the group. I am So Sorry to hear that you are in the same predicament that I am. I have had fibro since 1982, and it has been my full time job ever since. Very Difficult to live with, and Very Difficult to treat proper. I hope u don’t mind a lil info, to try and help u. I am in Ohio, and can’t help u with dr’s., or anything like that; but I can try and help you by telling u what has helped me. The heating pad does help but it has to be with an ice pack. 20 mins. heat, then 20 mins. cold; to relieve the pain. Good for the muscle spasms. Couldn’t tell u how many times I just grabbed something from the freezer to use. Works Wonders. Stretching exercises are good too, and good sleep is very important. Now the meds, if at all possible, stay with the least amount of meds that u can. Over the 35 yrs. I have been on just about everything, had to. I was at the E.R. at least 3 times a week, in the beginning. After 25 yrs. the meds almost did me in. I now have liver disease on top of the fibro, because of OxyContin and other drugs, and my doctor who didn’t keep track properly. Make sure they keep track of things proper, if u r on a lot of meds. I have tried Lyrica, and it did help, and I didn’t mind it. From my experience, my pcp dropped me, over a SS claim, and I wound up with a pain dr. I was put on fentanyl, the low dose; and unless u do his magic cure of injections he won’t give anyone an increase! So after years of the low dose of meds, u r right back to square one. In pain and very little comfort. I have done the injections & they hurt me something awful! He doesn’t care, the D.E.A. has us stuck! He’s afraid to medicate proper, or can’t and we are left to suffer. It has turned into a money game. They are making money hand over fist & and we are hit hard with appt. after appt., which is a lot of money with crazy amounts of Drug Testing! With the epidemic going on, it’s getting tough. We don’t have a voice anymore, and the only thing I haven’t tried is medical marijuana. I am going for that, if I can afford it, if not I would like to say that I am just going to ditch my pain dr. and buy illegal, cause I am pretty fed up! If you are lucky enough to get a good dr., stick with them, and work with them, but my bet is sooner or later you will be sent to a pain dr. God Bless You and All The Fibro Community. Hope I Offended Noone.
Hopefully I will get more help tomorrow.
We will chat soon
