What was your experience re diagnosis? I feel lost...

[TimeTraveller]

Hi guys!

I'm new to this site and was hoping to get some info re diagnosis. My doctor referred me to the local hospital to check if I have Fibromyalgia. I had my first appt with a rheumatologist who asked about symptoms/ did tender points check. Some were v sharp others not as bad. I then had blood tests done and was told that my appt was super quick (less than 40mns) by the nurse who looked genuinely surprised. I felt nervous and a bit lost as I walked out.

I'm in so much pain, I'm not really functioning these days. Four years and a long list of symptoms has now led to me feeling wiped out I used to pride myself on how active i was! I don't like not knowing why things are like this, it kind of scares me not to have a diagnosis yet. I've read about lots of people who got a diagnosis of some sort during their first appt, is that the norm or does it vary? Hopefully my blood test results will lead to more info next week. Any advice/info would be much appreciated! Thank you :grin:

 

[Ruralchick]

Hello Time Traveller and welcome to the forum.

The blood test I have to assume is to rule out other things. There is a blood test now for FM but it's ridiculously expensive and here I don't think any insurance will cover it.

There are other things that have the same symptoms so these need to be ruled out first. When nothing else fits it is usually Fibro.

Meantime there is a lot of info here, in posts and in the site. You'll have to keep up on your research as everyone is so different and different things work for different ppl.

Glad to have ya here, please post and let us know how its going.

 

[cmetryme]

Welcome TT! Some are diagnosed on first visit and blood work is to check for things like MS, lupus and other things. Some don't get diagnosis for years. You didn't get meds I take it. Not sure why your doc sent you to local hospital? Is that how you found the RA? Your PCP should have given you something for your pain. I would not have left without something from the RA either. It's up to you to get what you need to help you while waiting on the test results.
Please see my 2 posts starting a daily log book and why it helps and what is fibromyaliga?. Start your book now n document so your next visit you can get a treatment plan. Ask your GP what your treatment plan with him/her. Please post and let us know how your progressing.

 

[TimeTraveller]

Hi thanks for your replies! I have been given anti-inflammatories to be taken twice daily and I take paracetamol. I was very tired when the rheumatologist mentioned other meds I could take so I didn't take in the names. As I wasn't given a prescription, I called their secretary the next day who said that there were no meds to be taken in my notes. Im a bit confused! Looks like I will have to wait...I was referred to that particular hospital as that is where people meet with the rheumatologist when they have these kinds of problems in my area. Thanks again for your advice

 

[TimeTraveller]

PS I forgot to say that I double checked if the meds that were mentioned during appt were over the counter pills (that would help me whilst waiting) but the secretary was certain that there were no notes about this. Thought I would add that in case previous post didn't make sense. As it's the holidays and the GP surgery is booked up, I will have to wait and hope the blood tests offer some insight!

 

[Forgetmenot]

Hi and welcome, someone from the uk im excited lol.
First off a lot of ppl take years to get told they have fibro.i myself was told by my Dr and this was due to the fact he is studying it.
Second when I went to see the rhyme I was only with him 10 minutes, so 40 mins isn't so bad.

 

[TimeTraveller]

Hi Forgetmenot, thanks for your reply! I'm glad to hear 40mns wasn't that short, it was her shock that left me feeling a bit unsettled. I think the long wait + discomfort has made me over analyse everything! So glad I found this website

 

[cmetryme]

TT. Get pain meds from the RA. They Secretary will need to ask doctor to get you prescription. Tell her you want a call back from doctor on the meds. He may have not put them in the notes.

 

[TimeTraveller]

Thank you Cmetryme, that's a really good idea, especially if things get worse over the next few days. The pain seems to double every fortnight, or maybe it's just my patience levels that are dropping?!

 

[moe1959]

I'm in the U.S. So I'm not experienced with your health care, I hope you get good followup.

 

[TimeTraveller]

Thank you moe1959 that's really kind!

 

[TimeTraveller]

Hi guys just thought I would write a quick update. Found out yesterday that I've got an underactive thyroid which would have made the aches and pains worse. Still need to find out if there is anything else causing problems. Start meds soon so hopefully I'll see some improvement when the levels stabilise!

 

[cmetryme]

yes that is so true with the thyroid. mine is now under control but im told that will now be a life time med for me. i hope you see a difference in your pain level.
make sure you document everything you can, to see if the med is working or not working. there are a few thyroid meds that you can take.
get the ones that work for you.

may you find reduced pain levels ahead!

 

[TimeTraveller]

Thank you cmetryme! Your advice has been very helpful

 

[cmetryme]

thanks for saying that! i need to know that im helping folks here.