Hello, everyone! I have been trying to get a diagnosis for 9 years of very bad pain. I finally went to neurologist who said he thinks I have fibromyalgia. The pain has been not just pain, but excruciating pain. The kind of pain that makes one cry uncontrollably. He put me on 60 mg of Cymbalta a day and 75 mg of Lyrica twice a day. It has helped, but I still have pain. I have pain in my jaws, back, ribs, hips, legs, and ankles. The pain migrates from one area to another. I have been using capsazin and a heating pad. It helps a little, but I can't really function. I am supposed to be going to a pain management doctor sometime (when they call my neurologist back). I have three children, and I can't even get up. Any advice would be greatly appreciated. Nothing seems to help the pain I still have. Thank you for reading my post, and I am so glad I found this site.
A pain dr diagnosed me first, then he sent me to a rheumatologist, then my neurologist, internist who was my GP.
I was allergic to Lyrica. It made me swell like a toad. You need a good pain management clinic. If you had been a man, you would have been taken care of. I believe, you also need a good mental health care worker. I have a psychiatrist and psychologist.
You need help. Get new drs if yours aren’t helping you.
Hi Susan. I'm another Susan lol. I have Ehlers Danlos Syndrome and Fibroyalgia. A lot of doctors don't know much about EDS though as it is considered a "Zebra" disease. Zebras are diseases that are considered rare. I think EDS isn't as rare as they think but that's just me. I mention it because it can cause a lot of pain. www.ednf.org is a good place to look for info on it. They also have an inspire community with tons of good info
http://www.inspire.com/groups/ehlers-danlos-national-foundation/
Here are a couple more good links.
http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html
http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
I give the wiki site because its one of the shortest pages that has the genetic info listed. I know this may not pertain to you but I wanted to share just in case. I have a lot of joint subluxations and dislocations that I wasn't even aware of but they cause a great deal of pain. The pain is bad enough to just cry uncontrollably like you mentioned. There are a few experts in the world even though most doctors don't know a lot about it. A study was done of people with fibromyalgia and 50 percent or so of the participants also had EDS. Some people think that some are misdiagnosed with fibro when they actually have EDS but I think you can have both. I just wanted to add the info just in case.
Thanks
Susan W
Great information Laura! I also feel like I've lost several years of my life, just wallowing in pain and self-pity. Exercise seems to be a huge key in any disorder, as much as we don't want to hear that!
Mindful Based Cognitive Therapy is one of the best things that anyone with an illness can do for themselves. I live in a rural area, and I don't have anyone near enough that practices it, but I am still desperately searching for someone, because I have hope that they will help me get back on track.
It seems that you are in a good place now, I'm so happy for you!
I am in the same boat you are. I am cannot function at all. I was diagnosed with fibro in April and in September I was diagnosed with Chronic Lyme disease. I have the same type of pain that you do, that it is so bad that I cry in agony. I have tried Lyrica, cymbalta, and gabapentin and none of those have even helped my pain. The one doctor I saw wrote me a prescription for voltran gel and that didn't help either. My current doctor wrote me a prescription for Fentanyl patches and it has helped some with my pain. My heating pad is attached to me constantly. I got a nice mattress pad for my bed and it has helped me sleep better. I also take trazadone for sleep which helps tremendously.
Susan, so sorry that you have to be here! Unfortunately, what you're experiencing seems to be pretty standard for fibro sufferers. Maybe it's possible to have your dosages increased?
I see that others on here have offered some viable suggestions for some pain management. My rheumotologist recommended tai chi and water exercise. I'm not loving the idea of running out from a pool into the freezing cold, nor am i loving the idea of forcing my aching muscles into exercise but they may well help you.
My sister got some over the counter pain patches, Salonpas, and they help me some. They don't get rid of the pain but make it a bit more manageable. If you're interested in them, you should ask your doc if they would interact with your meds or not.
Unfortunately, REST seems to help us the most. And that doesn't necessarily get rid of the pain but it does help with the fatigue, which helps reduce some pain.
Waterwaves info may also prove to be helpful. I never thought anything about hypermobility but found out i have some. i don't know if you may as well but I looked at the images given for it and was surprised to find a match. it might be worth your while to take a look.
I wish I could give you more guidance but as of yet, effective pain meds haven't been found. Most of us struggle on with the pain, and learn to live our lives despite it, as best as we can.
Hugs to you and please come back!
Petunia
KJF,
Did you get any treatment for the Lyme Disease? My sister came down with it this summer and almost checked out for good about a week and a half after getting it while hiking. Luckily, I told her doc that she'd been out hiking and asked if Lyme was possible and luckily the doc found the bullseye rash. She got my sis on meds immediately. My sis seems to tire out easier than before but is much much much much better. I don't know how well the meds work if you've had Lyme for a while but I hope you've been treated for it.
I feel for you. That's one heck of a combo, Lyme and fibro. I'm so sorry that you got Lyme - it's absolutely awful, even worse than fibro. And I'm sorry that you also have fibro, which is painful.
Lyrica didn't do much for my pain until my dosage was increased. Did your doctor do this for you with your pain meds?
You also might benefit from checking out Waterworks' info. She's been tirelessly campaigning to inform us about hypermobility and its pitfalls, as well as EDS. If some of us have hypermobility as well as fibro, or instead of it, it would be of great help to know what we have.
I truly wish you and others could find something for the fibro pain. A pain management clinic is worth looking into. As is a rheumotologist, if you haven't yet done that, to rule out other illnesses that can mimic fibro.
Hugs to you,
Petunia
I fight similar pain, I also use lyrica, cybalta made me zombie like. It was not until went to a pain specialist that I go started on the right path. The first thing he did was get off of the 3200mg of gabapenten I was taking, then put me on 150mg of lyrica a day, he said I probably had fibro, and then he sent me to a rheumatologist. I do have fibro plus psoriatic arthritis. I have been with him for about a year. My suggestion is find a rheumatoligst, and then go from there.
And it was significant that you went to a rheumatologist, as psoriatic arthritis is another ballgame. The meds are different, the outlook is different...so it's a darned good thing he got you to a rheumie.
Rancher, I'm sorry you've got both things going on. That's a handful. I hope you're on some good meds now for the PsA and are comfortable.
Sincerely,
Petunia
Susan,
I will cut right to the chase here…you must get tested for Lyme disease and all coinfections. Most likely your doctor will not want to consider this…but you have to think outside the typical medical box. But if you can get the doc to agree…get the kit from Igenex lab. Many of us have fibro, lupus, you name it…and have found out that we have other underlying infections. You’re going to get a lot of feedback on this topic that will be informative. It cant hurt to get tested!! Best idea is to find a doctor that specializes in lyme disease.
Tracy
Susan, I agree with Tracy, that you ask to be tested for Lyme disease. Many doctor's will not want to order the test for you. For me they did a blood test that just shows the antibody and it came back negative, but that blood test is very inaccurate so I had to find a doctor who would do more specific Lyme testing and the tests came back positive for chronic Lyme. One piece of advice I can give you is that you are your own best advocate. Speak up, and if you do not agree with what the doctor is telling you or suggesting, let them know what you think. I have learned that a lot of doctor's these days do not like to think outside the box, they think how their textbooks taught them in school, which is very black and white. I have mad some doctors really mad for speaking up and standing up for myself, but its the only way I can get things accomplished sometimes.
My neurologist hasn't run any tests at all. I did have a CAT scan and MRI of my spine (where the pain started), and everything looks fine. Oh, neurologist did run a long list of blood tests, all of which came back fine. So, he gave me Cymbalta and Lyrica to see if it would help with the pain. What tests are there to find if you really have fibro? I used to have this pain occasionally. Now, it has been since the summer and hasn't let up at all. BTW, thanks everyone for your advice. HUGS!