Fibromyalgia Support Group

I'm a 37-year old married female. I've been living with this burning pain for the past 3 years. I had to resign from my job, because I could not cope with the pain. I still remember clearly when it all started in my lower back, moved to upper back and even spread to my ribs. I'm telling you, this was a terrible feeling, my body felt inflamed. The heat moved to my arms and legs, resulting in numbness. This is a constant burning pain and no medication helped. Some days I also feel like I'm swolen around my bra-area. Anybody experienced this?? My back is also sensitive to the touch. Can't lift my arms for too long and also can't be on my feet for too long. I've been to a Pain Specialist. He did some cortisone injections, but was unsuccessful. He also sent me for a MRI-scan and some bloodwork. Everything came back fine.

After reading through most of the stories, I recognised some of my symptoms. I've been to a Neurologist and she prescribed Lyrica, 25mg twice per day. I've been taking the Lyrica for 1 month now and I can feel there is an improvement in the pain. However, the pain won't go away completely. Not sure whether Lyrica is the right meds for me. The Neuro told me she want me to see a Rheumy, and he will most probably dx me with Fibro. My appointment is in 2 weeks time and I don't know what to expect. Any advice??

Hi Avril,

The doctor will ask you about the symptoms you're having. He'll probably do blood work to rule out other diseases such as lyme disease etc. He'll also do a physical test on what's call tender points over your body. If at least 11 out of 18 cause pain he'll probably find that you do have fibromyalgia. Lyrica is just one of a few medications used to relieve the symptoms of fibromyalgia. I take 600mg of neuronton 4 times a day. Neuronton is generally used to treat seizures but it is also used for severe nerve pain. I don't know if there is a medication that takes away the pain competely. If you feel that the lyrica isn't working talk to your doctor. He may increase the Lyrica or give you something else. Good luck with everything. Keep us posted.

Hugs,

Kathleen

I think, for most of us, the best we can expect is "controlled" pain. What I mean by that is pain that is controlled enough that I can do what I need or want to do. It is never completly gone, there is always something somewhere but I can still do things.

Not as much as I used to.

Not as much as I want to.

But with the diagnosis comes a reallignment of expectations.

It may mean scaling down what you want in a home, life, everything.

That said, it is still your life, and you can still have joy and accomplishment in your life. But you will have to learn how to control the pain, with meds ,exercises, diet, and attitude.

Theuy are discovering that ,surprise, stress plays a huge part in fibro....no surprise there, given that the US worker is more productive and works more hours than any other worker in the world. And now we are constantly tethered to our bosses......through fax's, cell phones, and everything that came since......

you do need to get diagnosed, but believe it or not, once you know your enemy you can begin doing what you must to wage war in the fight to reclaim your life.

good luuck

Natalia

Hi, Avril, welcome to the group!

This is the place for good, caring support, willing ears to bounce stuff off of, shoulders to cry on and even a little humor sometimes! I hope you'll love it as much as I do!

As for what to expect, just tell the doc your symptoms (write them down so you'll remember them all), and how you feel at certain times of day - what your "pain triggers" might be, things like that. He/she will listen, probably do a "tender points" test, and hopefully come up with a diagnosis and treatment plan. Each new med or combo of meds needs to be given a chance to work before it can be decided whether to raise a dose, add or change a med, and so on, so it may take some time to arrive at the right mix of meds for you; so don't worry if you have to work at it for months, it will be worth it when you start to feel better - in some cases, almost completely better (as in mine, but not everyone's) but it will certainly be, to one degree or another, definitely better.

Glad to have you aboard - let us know how the appt goes!

I know it's been a while, but thanks for the warm welcome and advice. One thing I must say is since I've been using Lyrica (just for more than a month), I'm feeling so much better. I still experience pain, but more towards the end of a day. I've also tried to cut down on my dose, instead of twice a day, I only take it when I have pain. So far, I don't have any side effects. At first I was a bit worried about the weight gain, but sofar, so good. I'll be seeing the Rheumy on Monday, and hope she don't tell me there's nothing wrong with me, since my pain is not that bad anymore.

Keep u all up to date re: my appointment and wish me luck.

Love

Avril

good luck and I am so glad to hear lyrica is doing well for you..I myself couldn't take it..

Good luck at the dr appt. It's not always that your pain isn't that bad anymore it's usually that your just not in as bad of a flare as you were so if you explain it that way they will understand it more. That's how I say it to my drs. If you tell your dr you aren't in pain anymore they very well might question their diagnosis because drs these days are I will just say kind of weird it seems. You have to be your own advocate at times and I don't know how your dr is but from the stories on here if your dr is like some of theirs it would happen. So I suggest just telling them your flare is low, your pain levels are lower than before but pain does still exist. Keep us updated and good luck again! Hugs, Stacey

Avril,

The lyrica is more effective in the long run if you take it twice a day and not just as needed. I know we all hate having to take medicine, but I don't want you to go into a flare or have pain. Ask your doctor about it. Good luck and let us know. Lynnette

Avril,

Just like lynette said Lyrica isn't a take as need med, I know we all hate taking meds but Lyrica is one that needs to stay consistent in your body so that your pain will stay at a lower level, if feel makes you to tired talk to Dr, but a lot of us on here take our larger dose at night and smaller dose in am's and once body gets use to it the sleepiness in am does go away......

Avril, A very warm welcome to You. Have zero knowledge on this med. Meds am currently on are:- Tramadol, plus, Gabapentin/Neurontin- just these two prescribed meds. Do not take any other prescribed meds. Do take a marine oil capsule called Efamarine especially for ladies as it also contains primrose oil( Omega3&6) helps with joints as well as stablises moods around time of month, and Vitamin C tablets, also. Also, try to fit into my day as much humour as well as positivity as self prescribed medicines- following in the footsteps of the great late Norman Cousins. Use a TENS machine from time to time. Also find osteopathy helps me especially as have a slight curvature of spine yet rarely can afford this treatment.

Good luck with everything Avril.

Hope you will have a much blessed weekend where your blessings will outweigh all of your challenges.

Warmest wishes, huge gentle hugs, dolphin smiles and Celtic blessings, Love Clarita the bat girl

xooxooxoox