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Not sure what happened...need advise
12 Replies
cjm - March 4

This may end up being a lot of venting.
I've been seeing a pain management dr. since July because of an injury to my shoulder that wasn't getting better. All of a sudden I was switched to his P.A. The 1st visit with him (the P.A.), he prescribed Lyrica, without any explaination, and I don't ask questions. I did some reading and came across Fibromyalgia, I was shocked reading the symptoms because it was describing me for the last 4 or 5 years. The next visit with the P.A. I brought it up, we had a long conversation and he seemed very sympathetic. He checked tender points and said it was a very good possibility, he talked to the Dr. and gave me Sevella. I had and appointment with the Dr. yesterday and now I'm comfussed.
I told him I have felt physically better with the Sevella, but don't like how it makes me feel, I explained since I got to the highest doseage I have had 5 migrains in 2 weeks when I usually only have 2 or 3 a month. I also told him I didn't talk to him about all the other pain because I was there for my shoulder. At that point everything seemed to change with him... he told me I don't think it's fibromyalgia I just used that diagnosis to get the Sevella approved. The rest of the visit I felt like he had one hand on the door and was dismissing everything I said. He did sort of check tender points, nothing like the P.A. did, just lightly pressed a couple spots and said yes you do have tender spots, but not enough pain. I didn't have time to tell him I've always had a very high pain tolerance and have spent the last 4 or 5 years hidding what I feel, I've gotten good at not reacting to pain. He never talked to me about the other sysmtoms, not sleeping, IBS, memory problems that are only getting worse, headaches and migrains, shooting pains in my arms and legs, hands and feet that tingle and go numb at times, fatigue, stiff and sore for an hour or two when I get up in the morning, and I hate to say it, depression. There are times like now that my left foot hurts so bad that I can barely walk on it, at times I'll get a horrible pain at the base of my neck. When my foot or neck do this it usually lasts for about 2 weeks and then goes away untill the next time. I'm sure a lot of what happened is my fault, with my foot I did everything in my power to walk normal at my appointment. I've never talked to this Dr. or my family dr. about everything going on because I would have felt like a hypochondriac, and I never knew all of these problems could be related. The Dr. then gave me RX for 3 months of Lyrica, a lower dose of Sevella and the tramadol I've been taking daily for months. Said I don't need a follow up, I can go to my family dr. if I need refills, oh and take take Vitamin D, because everyone is Ohio is probably Vitamin D deficient.
I sat in my car for 10 minutes crying, before I walked into the Dr. office I felt like there was a reason for how I have felt, and in the end I was just dismissed. Now I wonder, is all of this in my head, I've manage to explain away, and hide pain for years so do I just go back to that. Why did the Dr. give me RX for more Lyrica and Sevella if he doesn't think it's Fibromyalgia? Do I go to my family dr. with all of these complaints, or will I just feel like an idiot again.
If you actually read this whole thing...sorry for the lenght, sometimes it's much easier to talk (write) to strangers then people you you know.


tinosgirl - March 4

I have been on Savella for two months, and I really don't know if its working or not. I take Equalactin for the IBS. Only thing that has ever worked. You can get it at Walgreens but they have to order it. I think the sadness and depression is from constant pain. My husband does not understand that all I like to do is lie flat on my back in bed. I too have the neck pain and after 14 facet shots and four epidurals, I have the pain back again. The shots only lasted about five weeks. The Fibro fog is annoying too. Sometimes I will tell everyone, that the only place I DON'T hurt is the tip of my nose. My family doctor still does not recognize Fibro; just my pain management doctor does.


Fantod - March 4

cjm - Welcome to the board!

The doctor that you saw was a complete ass! You should be furious that you were treated so badly. Report his behaivor to your insurance company in writing. There are still plenty of doctors out there who simply do not want to be bothered with Fibromyalgia (FMS) patients. His assertion that you used a possible diagnosis of FMS to get your hands on Savella is rather irrational. I can think of a bunch of other drugs that I'd rather have than Savella. You need to see someone else ASAP.

Go online to the National Fibromyalgia Association website and find a list of fibro-friendly doctors in your area. Or, call your local hospital and ask for the physician referral service. See if they can match you up with a rheumotologist and/or a pain specialist ( I have both) with an interest in FMS. Get copies of your medical records and any recent bloodwork to take with you. That will save time and money. And, for God's sake, when you do see this doctor, tell them everything. A key thing to remember is that the longer a chronic pain cycle continues, the harder it becomes to manage or stop. And, your immune system has probably been on overdrive for a long time trying to combat all of the pain.

All of that being said, I think that you now realize that you have been your own worst enemy in this whole scenario. After all, not telling the doctor the extent of your symptoms and that you have been experiencing chronic pain for quite some time is not helpful at all. My conclusion is that you must be stoic to put up with everything that you have described.

Have you seen a podiatrist about your foot pain. Plantar fasciitis is one of the "perks" associated with FMS. It causes excruciating pain and requires treatment.

You are not crazy or a hypochondriac. Fibromyalgia is recognised by the Centers for Disease Control, The National Arthitis Foundation and The World Health Organization. We are all in this together. Go online to Amazon and purchase "Fibromyalgia for Dummies." It has good, basic information which will be very helpful to you. Being your own best advocate when it comes to healthcare is very important.

Good luck, take care and keep in touch.


January - March 5

tinosgirl - I see you mention injections. I don't know if you are getting cortisone, but there is recent research out that shows that cortisone shots can make you feel better for a month or two, but after about a year, you have increased pain. One article was in the Wall Street Journal. Also, they think that getting shots into the joints can cause damage to the tendons. I know, every doctor you see is going to try and push these on you -- but you might want to research if you really need them, or if they are really helping you. If you read or print off a copy of some of this research, you might want to ask your doctor some questions.

I'm like a broken record, but I'll just add it again, a strict gluten free diet really helped my pain and depression, though I had to wait about a year to start noticing it.

Good luck, hope you feel better.


January - March 5

cjm - sorry you feel so bad. Sounds like you need a better doctor.

It might help if you make a list of all your complaints and just hand it to your doctor. You sure sound like a lot of other people on here with fibro!

And remember the newer fibro drugs like Savella and Lyrica do not work well for everybody, but they are being aggressively marketed right now. If you can't tolerate them, there are other treatments. Read this forum, about the different drugs people use. Also, research the side effects for any prescription drugs you are taking, because sometimes it's the drugs that are causing your problems!

Hang in there, hope you find a better doctor!


kvc33 - March 5

Hi, I was a bit confused by your post. Did your doctor accuse YOU of using fibromyalgia to get Savella or did he say that the P.A. used that diagnosis to get it approved? It is clear that this doctor is not comfortable treating someone with fibromyalgia so you must see a different one. I also think you need to get some counseling or at least read some good books to learn how to be assertive and honest, both with yourself and with others. You must ask questions and tell your whole story at your appointments, that is part of your responsibility as a patient. Pharmacists are wonderful allies, ask them any questions you have about medications, interactions and so on. Here in Canada, anyway, every prescription comes with a printout of what the medication is used for and possible side effects. Always know what medications you are taking, what they are for, and how long it takes for them to work. Be aware that some doctors will be dismissive, don't take it personally and just move on. I've had lots of encounters like that and don't let it upset me. I always know more about my conditions than my doctors do--I see them as a tool not an authority.


cjm - March 5

The Dr. said he used the diagnosis to get the Sevella approved. (Makes you wonder if he gets a kick back for writting the RX). Believe me I wouldn't because I don't like how it makes me feel. He shouldn't think I was there or making things up just for drugs, when I first went to see him I told him I prefered the tramadol for pain because the vicodin made me too loopy. I also thought this was a good Dr. because one of his specialties is Fibromyalgia.
Since I have basically been dismissed by him and I know you have to go off Sevella slowly, I'm going to do that on my own. I think after that I'm also going to taper off on the Lyrica. I know I've been feeling less pain since taking them, but want to see if it goes back to where I was before. That way if I go to a new Dr. about this I'll be starting with a clean slate and I'll be able to tell them how I was with and without the medication. I have a appoint with my family dr. in July... so I guess I have to figure out how to talk to him by then. If it gets worse once off all the meds then I'll move up the appoint.
We also get the print outs with medication here. I tend not to read them unless I have problems because I don't want to get the idea in my head. I also have 2 kids in nursing school, one almost done (yeah) and they always check medications and ask questions. The Sevella can have an effect on blood preassure so they both keep checking mine.
I hate to say it, but one of the reasons I think I don't complain, or talk about what is going on, I hate to say it but I'm married to a hypchondriac. He is always complaining about something and runs to the Dr. at the drop of the hat. I just don't want to sound like that. I will say though since I told him what may be going on with me, he has been amazing.
I want to thank everyone for the feedback. It's nice to know your not alone.


January - March 5

Hi cjm, and all. Just wanted to add some info. I read the page or two of side effect info that comes with meds religiously. But those are only the "common" side effects.

I had a very bad time with some antibiotics. I asked my pharmacist to run off what he had in his "professional" database about one drug. He printed off 30 pages! It was a most enlightening read. I doubt my prescribing doctors knew much about the facts on this common drug. I was having side effects that were described in the literature, and the drs. dismissed me, saying it was my fibro or fibro drugs. No, it was the antibiotic. One side effect I was having was ataxia, which stopped when I quit using the antibiotic. So my pharmacist became my new best friend after that.

Glad you have such a good support group around you. You're lucky!


kvc33 - March 5

I knew there had to be a reason for your not wanting to describe all of your symptoms to a doctor. How do you know that your husband is a hypochondriac? Has he been diagnosed as such? If he truly is, it means that he has a mental disorder that needs to be addressed. In other words, he IS ill. There is no shame in having either a physical or mental health problem, and since I assume that you love your husband I think you would agree that a sick person is not any less lovable. I think you really need to take a look at your beliefs in this area. They are doing you harm.


denjen - March 5

I could not have said it better!! You rock!!
Listen to that advice and please, please speak up. We need to talk about this to educate doctors and peers. Don't tolerate being treated like your crazy. You are not and this forum proves it. This is not in our heads, I can think of 20 million things I would rather have in my head then feeling like crap all the time. Stay strong and get on that road to living a semi normal existence.



cjm - March 6

Hi all,
I know this is going in a different direction, but another question. this is the 3rd time I have had a problem with my foot in the last 4 months. It hurts like hell. Everytime it has start with pain in the bottom ball of my foot and then radiates to the top, from the toe joints (middle 3 toes) most of the way to the front of my ankle. It hurts to put weight on my foot and after to do walk it throbs for 20 or 30 minutes till it settles down. This time it has some swelling across the top of my foot. It usually lasts about 2 weeks, I'm about a week in. Could this be from FMS.


Fantod - March 6

cjm - Not likely as there is no swelling associated with FMS other than from some medication side effects. As I said before, you need to see a podiatrist immediately. Based on your post, this is an ongoing problem that you have ignored for some time. I just hope that you have not not permanent damage in the process. Good luck and take care.


denjen - March 6

I agree with Fantod. My feet hurt all the time but I have never had swelling. What I found that works for me is to wear good shoes and change them at least 1x a day. You need a specialist. Don't deny yourself anymore.



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