So sorry to hear about that with your fiance but I don't want to scare you but get used to it. There's a post on here about one liner's FIBRO suffers hate to hear. Number 1 is " You don't look sick!" No you should not be left to diagnois yourself. If you need to ask to be referred to a RA Doctor that deals with FIBRO. Unfortunately, from what my RA told me there are not that many RA Doctors left that deal with FIBRO patients because "there's not much they can do for them". Atleast that's what my doc said. She is very very good. It took a really long time for me to get my diagnois and it was a long road before and a long road now. I am still changing meds every month it seems until I get the right cocktail. If you need to talk I am here for you. Believe it or not when I was told what it was I was happy, only because I finally knew what was wrong with me. I still feel like there more wrong with me and I keep talking to my doctors, just in case. Go to the group Fibromites....there is a lot of good information there for you to print and read or just read.
hugs,
Tina

Hi, jennie, and welcome to the group!

First, let me say, I know just how you are feeling....I was ill with fibro for 20 yrs before being diagnosed, and those were some very frustrating years!

I would suggest asking for a referral to a rheumatologist if at all possible...that way, tests can be done to be sure nothing else is present, and that fibro is the accurate diagnosis. If it is, then there are some meds than can be tried that may help the muscle tightness, insomnia, etc.

My doc also recommended either Yoga, pilates, or swimming as easy exercise for tight muscles....There are lots of supplements that help some people with certain symptoms. For ex, D-ribose helps me with fatigue and Magnesium helps with pain.

I made some diet changes that help me alot....more lean protein and fresh fruits and veggies, less carbs. I don't do much caffeine, and NO processed sugar, as it sets of my fibro terribly.

Make sure to get plenty of sleep, and rest when you need to....pace yourself and give yourself "down days" when possible to recover from busy times.

There's a sub-group called The Fibro Puzzle where lots of us have told our 'fibro stories'....if you'd like to check it out, here's the link:http://www.dailystrength.org/groups/the-fibro-puzzle

There are some good books and websites out there on fibro as well...read read read and become informed.

If you do have fibro, there are lots of things you can do to help feel better....but if can be a trial-and-error process. We're happy to help offer suggestions and info about what has helped us.

Again, welcome, and HUGS from down south :)

welcome to the group. Youc an get lots of good advice here and meet lots of people who truly understand what you are going through. As Cajun Tiger said, find a doc who specializes in fibro, if you can. Have you been tested for other auto-immune disorders? I wish you the best of luck and hope you will find a lot of helpful info here.

Hello and welcome.

Finding the right treatment option can be a long road. Just have patience. There is no magic pill that is going to make you all better but there are a lot of things that can help you feel more comfortable.

Sending hugs.

I have fibro but it does not have me. I take flow-dose naltrexone and it has put my fibro IN REMISSION....I know longer suffer. I had it for over 25 years..... Now I take NOTHING except low-dose naltrexone 4.5 mg and I am NOT IN PAIN...NOT SICK, NOT TAKING IMITREX, ULTRAM, FLEXERIL, NOT NOT NOT......this drug does wonders for MS and chronic fatigue syndrome and fibro........ like I said...am not sick any longer and I TRIED IT ALL BEFORE THIS DRUG....NOTHING WORKED ......NOW I HAVE A LIFE....tangerinebear xo

Join the club thats what most people seem to think! I too have IBS. Real bad bouts with it.Kind'a got it settled down right now.TRY and find a good Dr. to help you with the aray of ailments that go along with Fibro.I go to my family Dr. and she refers me to other Drs.according to whats flairing.I go to a pain management Dr. which has been very helpful.Theres some good info.available on this web site.Remember we at DS are going through or have been through what you are going through.We're here to listen and to let you know you are not alone.

welcome jennielou,

i think you're gonna like it here, i've found alot of support and understanding from many kind people.

there's a 'letter to family and friends' on here that you should print out for your fiance. lots of info and proof that what you're going through is real.

Welcome jennie

The advice to see a Rheumatologist was the best -- you need to see a 'specialist' and the rheumy is the one. I was diagnosed fourteen years ago with CFIDS/Fibromyalgia/MPS and I also have TMJ, IBS, GURD-acid reflux and am now completely disabled from the CFIDS. For me the overwhelming exhaustion is the most severe symptom I have and I have to take Adderall to simply get out of bed or I'm stuck there pretty beyond hope. Along with exhaustion I get these severe bouts of muscle weakness where I have fallen and even had my leg collapse under me breaking all the bones in my ankle needing emergency surgery to repair it.

See a Rheumatologist that understands CFIDS/fibromyalgia/MPS types of syndromes and you will have your foot in the right door to get needed 'real' help.

Be very gentle with yourself as the medical profession has a way still of simply dismissing us as 'clinically depressed' that even though by the time they are done with us many of us are in fact depressed but the depression is from being treated as if we were simply 'out of our minds' instead of seriously ill. The depression we have is 'situational' depression caused from our illness.

I had to have my husband go in to all of my appointments with me for the doctors to begin to truly take me seriously and to begin to help me. Without my husband I don't think I would have ever received a proper diagnoses.

((hugs)) Patricia

Thanks for all your help. I am so new to this.

I think I have got my fiance tounderstand a bit better but we had an arguement over it. He said "but you are always saying you have this and that so how do I know this time is not just like those". Well the reason I always had this and that is because they were all symptoms of FM! Think I got him to understand

But then I was trying to explain it to his mum and she basically told me that I would grow out of it (I'm only 25) and that once you have children you forget about yourself. That really pissed me off as its just because I am thinking about myself all the time that I have this. Its not because I am selfish! I have OCD and emetophobia as well and I think she thinks the ame with those as well. Why can't people bloody realise that mental disorders and ones that can't be seen are real as well. Mine are all caused by the lack of serotonin in my brain therefore they are physical. But I don't have a big serotonin fuel guage on my head saying empty! My fiance has deafness in one year and I know that he thinks that is worse than my issues as mine are in my head. he has never said it but you can tell!

Fortunatelly my mother, sisters and dad are all very understanding. They know how real my problems are as they have lived through the worst years of my life which was when I was 16. Plus its my mums sister who has this too so mum understands. I just wish I could help raise awareness of these sorts of problems and make people realise that they are real even though you can't see them.

With regards to treatment, I am going to talk to the physio when I see him and ask him what to do next. Hopefully he will refer me onto a rheumatologist!

Jen x