I had my check up appointment yesterday and was holding out hope as Ive been feeling so ill the past 8 weeks. They have no told me I might have fibromyalgia, i might have chronic fatigue, i might have glandular fever...it might be something else so we'll run more bloods.....
its so disappointing not to have an answer - did anyone else get this 'it might be' ?!
Anyone else with Fibromyalgia too?
thanks
em
I had the might be too, unfortunately it's not an easy process but you wouldn't want them to misdiagnose as this leads to utter frustration as well as the wrong treatment. At least they're willing to keep testing and not fob you off completely.
My daughter was recently told she might have fibromyalgia, (her official diagnosis, is Hypermobility syndrome) my understanding is that it's to do with inflammation of muscle? But I'm not an expert!
Hang on in there and hope you get an answer soon and start getting the help that will work for you 😊
Hi Emms
Sorry to say this but it can take years of battling and tests to get a diagnosis!. It has in my case and whilst the doctors know now it's an auto-immune illness, they still are not sure which one so are keeping everything under review!. Fibromyalgia is pain without inflammation and is treated with painkilling type drugs. What is good is that your Rheumy sounds like he is keeping an open mind and that is what you need with these illnesses!. Did he say when he'd see you again?. Hope I've helped and you feel better soon.X
Im seeing them again in 8 weeks unless anything major shows up in my bloods that I had done on Weds....
Im trying to change the things I can like my diet..so hopefully by healthier eating and more fish it will have an effect on my fatigue and aches....will keep everyone posted.
emmsx
Hi there,
Yes, I'm also in limbo to a certain degree. First chronic fatigue syndrome, then fibromyalgia and now 'probable mixed connective tissue disease' . Things are moving on but it's a slow process. Hang on in there.
Hi there I'm in the same boat right now! 6years, 10 doctors and no diagnosis. All I can say is keep your chin up. Rest whenever your body tells you. And don't give up! I know it's frustrating but somewhere out there a good doctor will come along and figure it out. I have a lot of crippling symptoms, some days I'm so depressed over feeling so ill with no explanation. Fibromyalgia is what they told me to, but that doesn't sit right with me! So keep pushing for a right diagnosis. Be well!
Im not sure how I feel about being told it could be fribro either, i felt like its just an excuse as they dont know what it is.
Im making my own changes now with my diet and am hoping that i can get more energy by eating really well with loads of fruit and veg
When I feel low (which is quite a bit at the mo) I try to think of at least one thing every day that makes me happy....just a small thing but at least one everyday.
emmsx
Cut down on sugar, it is in everything! No refined food. Basically half your meal should be greens. It does help a bit. I also start everyday with an anti inflammatory smoothie. I will try any holistic approach there is for relief. And really when you think about autoimmune diseases the only thing we can do is treat the symptoms. And if I can do that in a more natural manner then I think it is better for our bodies! Keep your head up and stay as positive as you can. There are good days and bad days. All we can do is take rest when we need it. This thread has been helping me cope through these wild changes my body is going through! Take care! If you need anymore pointers this is the place to be!
Hi Emms,
Hope you are ok. Good that you are thinking positively about how you might manage things. I hv secondary fibro following my arthritis/lupus/mctd. It is good that you have had your bloods done to rule out a flare, although they don't always show anything. Having the diagnosis of fibro has actually helped me in a strange way as it has explained some of my symptoms that didn't really fit with my other diagnosis.
I have had physio for fibro which helps. The physio also focused a lot on sleep - it is essential that you sleep properly as this makes you worse very quickly. I have found a combination of gentle exercise and improved sleep has really managed my symptoms. I do also have pain medication that I fall back on to in more desperate times. You might want to consider speaking to your GP to see if they can prescribe something short term until your next appointment, it might help you feel better. Diet is also a good idea - I have completely given up dairy and that helped.
Hope you feel better soon x
Hey emmasss
Because of my lupus I am already on pain meds, the doc said that the options for meds for fibro would or could make me drowsy, last thing I need hehe, so avoiding them for now.
I have started yoga as I Thursday and am hoping to learn more meditation techniques to help me manage the pain.
What physio do you have?
And for now a massive diet change - although my morning coffee is still a must!
Also someone at work told me about this book, how to quit sugar, so that's been ordered too. Anything to avoid drowsy medication.
I hope you are well.
Thanks
Emx
Hi Emms,
Sorry been a manic week so haven't had a chance to reply. I had Aqua therapy with the physio which was really helpful, so might be worth trying. Hope you are feeling better. X
Rheumatology appointment
Update from appointment 
Rhumatology appointment
