Just got diagnosed with Fibromyalgia...now what?

Theresa like all CP it will be hit and miss regarding medication, but they have found anti-epileptics and some anti-psychotic medications do help, medication like Lyrica and Gabapentin.

Don

Hi T . I wasn't aware that there are any blood tests for fibromyalgia. Do you know what these blood tests were. Glad to see you are making progress with your illness. regards Outlast.

Hi Theresa,

It's crap that you have fibro, but good that you now have a direction to go in as far as treatment although, from what I understand, it's a bit like trying to treat CP as far as finding the treatment that suits you best. I think there's lots of info on the internet, but I usually go with the .org sites for info on things like this and you'll probably find that there's a fibro official site. (Some medical sites are set up by internet marketers so can have dodgy info on them)

What is the blood test you had done? That's great if they have a way of testing through blood tests now. It used to have to be diagnosed by a certain amount of sore points on the body and the rheumatologist asking the patient questions about symptoms.

Hope you find some good treatment that works for you soon.

Hugs,
Fee

Hi Theresa,

I hope that you can find a satisfactory treatment after all this time. Fibro is often treated by Rheumatologists, so maybe your GP could refer you to one if he/she thinks it is appropriate and if that would suit you.

Also, just to add to Fee's advice about research; .edu and .gov sites are also reliable.

Mary

Hi Theresa,

Fibro huh. :ohmy: Well, I have suffered Fibromyalgia for most of my 55 years. In fact, I think more than 45 years of it. 🙁

I was diagnosed in 2002 and have been on the internet since then either in support groups as a general member or as a moderator. Lately though, I have not been a part of any internet groups for fibro. But this is the very first time I have ever heard of there being a blood test.

The only significance that there use to be with regard blood tests, which led doctors to believe you may have Fibro, was that they would do a whole bunch of blood tests and the whole lot would come back negative, yet they can actually see with their own eyes, your swollen joints, or skin that is red and on fire, or one of the myriad other symptoms that manifest themselves.
So, the doctors scratch their heads too. However, once they have your 'blood test history', they also go looking at 18 trigger points in your muscles at different parts of the body. And I think if you have around 11 of those that are very painful to the touch, then coupled with the other information and your history of doctor shopping searching for answers as to why you feel like you are dying from several different conditions and diseases, but there is nothing wrong with you as far as tests are concerned, they finally come to the conclusion that you have Fibromyalgia.

How to treat it?
They don't have a clue!
They don't even fully understand it yet, and indeed, a lot of GPs', physicians and specialists, don't even believe it is a valid diagnosis and simply scoff at it. The latter are the uneducated ones, who have not yet taken the time to do a bit of reading and catch up with the latest science.

When it comes to the pain side of Fibro, it is pretty much treated in the same way as 'chronic pain', because the symptoms in many ways are very similar or even the same. They could in fact be manifest in the exact same manner, but as yet they have not established that through proper scientific testing. That I know of!

I am probably completely ignorant of the latest science myself, so I am no expert either!

As for the migraines. There a many reasons for them to occur. They range from hormonal, neck problems from old neck injuries, to what they now have found to be certain vitamin deficiencies. And I know there are other causes I don't know about too. Somehow they need to find out what causes yours and then try to treat them. Mine are from old whiplash war wounds, from the battlefield of city roads. Hehe!

I suffer many other symptoms that have no explanation and don't seem to ever be listed among the common symptoms of chronic pain sufferers. But the problem is, you just don't know where to go and have these treated. The GPs' look at you like you are some kind of an idiot when you go to them, so you have to suffer in silence and not talk to them about it. The pain, is often the worst problem and is the most debilitating.

If you have not yet been on the medication roundabout, then I caution you to not follow the doctors like a Sheep and say nothing.

You know your body better than any human and you need to take some responsibility for what is wrong with you.
So, start listening to your body, document as much as you can about your symptoms and when they occur. You may get certain symptoms after a particular activity or from consuming a certain type of food or drink. Record it all!

You must be prepared to establish open and honest dialog with your doctor. if they start you on a drug and you get a really bad reaction first time round, don't just keep swallowing the drug making yourself terribly ill. Go straight back to your doctor and ask for more info, another drug, or a much smaller dose to see if you body can tolerate the drug in smaller amounts to see if it will help your symptoms.
Always be prepared to go back to your doctor at short notice, if you have a bad reaction to the drugs. If the reaction is serious, then you need to go to emergency and get some help.
Take control of your health and make sure you give your doctor as much relevant info as you can. Some doctors won't like you being in control, but that's bad luck. At least you won't end up ignorantly taking a drug that ends up seriously injuring you or worse. Too many doctors are frustrated, because too many people/patients don't take enough responsibility and expect the doctors to work miracles on little information. If we respect our doctors and give them all the they need, then we can expect that they will respect us and do the right thing and treat us with the best options available. If not, then ask why not!!!!

Never mix alternative or natural medicines with what you are given by your doctor, without telling your doctor that you are taking them, because some of these combinations can kill. It's not worth the risk.

But as for me being a fibro sufferer for almost my whole life, I found that my state of mind is the most powerful part of my continued survival. There is only a certain amount of disability that i will accept, then the damn thing can go to hell.
I will fight to keep what's left. No, that does not mean I push myself to do things I should not. It just means, that I will not allow this thing to take me down psychologically. Keep your sense of humour and accept that you will die of old age still suffering this accursed condition.
Once you can accept your lot, self-management skills then help you lead a pretty good existence, because you are not wasting all that energy trying to find a cure. It's not giving up. It's just getting smart and making the best of a bad situation. Acceptance allows you to avoid depression and gives you the ability to see and think clearly.

Anyway, I have waffled too long and said too much. If you have any other questions, please don't hesitate to ask. I'm always around somewhere. 😉

Peter B)

Thank you for all the kind words. All I know about the blood test, is she said it indicates an immuno disease and with my complaints and swollen stiff joints, I assume it meant Fibro. I will know more on Monday morning when I see her. I just don't know how to deal with this pain...I hurt everywhere. To move to walk, to cook dinner, everything. I am hoping they will get me in a pain regime, but who knows here. I can't stand codiene and they are so stingy with the one med that works for me. I will get more answers I suppose on Monday!
Thanks alll
T

Theresa, try not to assume anything if you can. That will only set you up on a one way trip down the road of stress and depression. We already have too much to deal with, so there's no point loading yourself up with anymore unnecessary stress.

I haven't followed your full story, so can you please tell me what drug it is that works for you that you say they are stingy about?

There is one thing that works well for fibro sufferers as it does for those who suffer chronic pain, and that is a good pain clinic that can teach your self-management skills. You need to learn these skills, because your future needs to be more about you and how you handle your condition, than it does about taking medication.
Trust me, if you can get into a good pain clinic, it will mean a whole lot to your ongoing health regime being positive and not negative.

There is no point jumping to conclusions. Cross that bridge when you get to it on Monday. And don't worry about the diagnosis. All that will do is give you some peace of mind and that you may have a name for all the crap you have been going through.

You just concentrate on trying to have a good weekend and let us know next week how you get on at the doctors. Once you know what the diagnosis is for sure, then you can start to work out what to do about it.

Peter

I am not sure what will happen next as they are getting me in first thing Monday AM. Apparently my blood showed high markers of RA/Fibro. The med that helps me is endone. Two a day and I can swim and do my daily yoga. Yet, they don't see the pain I am in without it. I don't worry about addiction, I see it more as a necessary evil to live the way I want to live. It helps me get my life back. Codeine makes me sick, but they really throw it at you in this country, LOL, they didn't so much in the states. I am just relieved to have a diagnosis, and ready to start the road to feeling better.
I leave for Thailand in a week for a two week dream vacay, our first time there, so I need to make sure I can enjoy it and have medications to help with that. I plan on daily massage while I am there as well, that will be nice.

T

Thanks Theresa for explaining that a bit further.

I still have to say that I am a bit puzzled at the blood test. Yes, I know that they look for Arthritis markers in blood tests, have recently been through that exercise. I have knuckles that are sore, red, swollen and the lock up on me, but surprise surprise, there is no inflammation in my system. Ah, the mysteries of life aye!

But as for there being a blood test for fibro, I am ignorant of it, or the doctor is just saying it. I would have though that if there was a way to ascertain that diagnosis through blood tests, then it would have been plastered all over the internet by now and the WA Fibromyalgia Support Network I belong to, would have been talking about it too.

So, do yourself a favour and don't read too much into what the doctor says in passing. They might be just thinking aloud at what possibilities could be drawn from the blood test results.

You'll soon find out Monday, then you can let us know.

As for your holiday. Make sure you use common sense when engaging in your activities. If you have a big day ahead, then prior to that day, rest A LOT!. But also be prepared to rest afterward too. Just try to not go at it full on, or you might bring about a flare-up which could see you stuck in your hotel room unable to move for a few days.

Take it easy, pace yourself and your activities, and you should have a great holiday.

Peter

hi theresa.like you,i suffered chronic migraines for years and years and now i suffer chronic headaches but i also suffer fibromyalgia.it does explain a few things when you find out you have this medical problem.do you suffer a lot of pain all over?i do but i just ignore it.easier said than done.no doctor has put me on medication for this so i can't tell you what is a good drug.i hope you find the answers you are looking for.hang in there.take care.

Hmm, Yea Peter I just don't know. I called to get the results and she said the doctor needed to call me back about two of them. I panicked a bit, lol. One was my cholesterol, but I have a feeling that was because I cheated and drank coffee with milk and sugar before the test, and the other she said indicated disease...I don't know...
I will let you all know Monday what is up

T

Theresa well that was a real big no no, cholesterol a whole lot of ailments require fasting blood tests otherwise you get false results, I fell into that trap once, I did the right thing by fasting that night but all day I was drinking Bundy and Coke, the test came back alright for my cholesterol which I have done every 3 months because of 2 heart attacks and ongoing angina attacks, anyway I was sent for a full blown glucose intolerance test because of abnormal readings, I ended up having 3 of them over a period of time because they thought I was border line diabetic, it turns out you should not have any alcohol for 3 days prior to have fasting tests as it sends blood sugars out of whack, you may have to inform your doctor about having a coffee before the blood test and have another fasting blood test.

Don

I told her and considering I have never had a problem with cholesterol, she took it in stride and said it wasn't too big a worry. After doing more research it sounds more like I may have RA. The blood indicators make sense for that. Like i said I guess I will have to wait until Monday.

hugs to all
t

Bumping up!

Retread wanted this topic back in circulation for all to see, because of its relevance to Fibromyalgia sufferers.

Peter