Fibromyalgia diagnosis help - Fibromyalgia Acti...

Fibromyalgia Action UK
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Fibromyalgia diagnosis help

kitdrawss
kitdrawss

I have been in really bad pain in my neck/shoulders, hips/lower back and knees for almost a year now. I went to see a great doctor at my GP practice about 6 months ago who instantly said it sounds like fibromyalgia, but I needed to have some tests done to rule out other conditions.

They all came back clear but I've been struggling to get an appointment with that doctor. I've had appointments with 2 doctors since who have no interest in investigating fibromyalgia and one even sent me home with a youtube video to show me some stretches I'd already been doing, and that was all!

I have another appointment with a new doctor to the surgery later on this week. I'm hoping they take my seriously because I'm really struggling with the pain and living my life with it. I'm only 19 but sometimes I feel like I'm 90, especially going upstairs.

I've contemplated changing GPs but I don't know how long the process is, or if any of the doctors there will take me seriously either.

If anyone had any advice as to getting a diagnosis I would really appreciate it. x

11 Replies
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kitdrawss.>^..^< hi

My best advice is to tell you to get an appointment with a specialist. A rheumatologist specializes in autoimmune diseases such as fibromyalgia. I'm not sure where you live but where I am in Massachusetts you can only get an absolute diagnosis of fibromyalgia from a rheumatologist. Make an appointment as soon as possible. Good luck

~Sharon

Hello and welcome!

May I suggest that you keep a list or a diary of your symptoms to take with you when you go to see the new doctor later this week.?

Also I have always found it helpful to take a friend or family member with me to doctor's appointments because the doctor seems to take you more seriously if you are accompanied. Do you have someone close to you who is aware of your struggle with pain who would be willing to go with you?

as all your previous tests have come back clear, could you ask the doctor for a referral to see a rheumatologist? They are usually the consultant who can give a fibromyalgia diagnosis.

Also, if you haven't already done so, then you may find it useful to look at fmauk.org which will give you lots of information.

I hope your doctor's appointment goes well, and do let us know how you get on. Take care xx

I asked if I could be referred to a rheumatologist , but have to go though the pain clinic first . to get assessment.

No one has mentioned a rheumatologist to me. Am seeing my physio soon so am going to ask. It’s either pain or possibly physio not sure. Will let you know later x

I have started to make a list of all my symptoms. I do it over a few days and add to it. Then I Print it off and lay it in front of them. They can’t ignore it when you do that. In fact they often find it helpful. I tend to clam up at appointments so sometimes don’t get it all out. This way I can’t mess it up. Good luck for Friday x

Hi Kit, Use this checklist (see below), if you are ticking the majority of the boxes then take it back to your docs and ask to be referred to a Rheumatologist. Like the previous responses, it is best to have a complete list of your symptoms and how often they are occurring. I'm in the UK and I was waiting on the waiting list around 7 or 8 months to see the Rheumatologists but had been having symptoms for approx 3 years prior to that. You've just got to be quite assertive with the doctors because they can just fob you off a bit. If you've done your homework and look prepared they can't really argue with you.

Good luck xx

phoenixrising.me/mecfs-basi...

Oh my gosh. It’s literally yes for about 95% of those issues! Wow 😮 thanks for sharing x

My pleasure. To be honest it was the only thing that i found that helped as, like you say, you get into the doctors office and with the brain fog you forget most of the symptoms that you were going in there to report in the first place. I have come to rely on lists for everything nowadays as it's the only thing that helps. Unfortunately lists don't come in handy when you are trying to find where you have just put the milk and it's definitely not in the fridge - I've found it either in the food cupboard or where i put my washing powder on so many occasions!!

Oh wow. It’s so nice actually talking to people who totally get it, and I have been so worried about it. Feeling like I’m losing my mind or I’m getting altzimers (don’t even go there trying to spell that!)

Pain doctor and others tend to blame pregabalin for memory issues. Not being funny I’ve been on them for over 3 years now and I wasn’t like this 6-12 months ago

I’ve got bad vertigo and dizziness too so every appointment I go to even the dentist is wheelchair because that with my spinal issues there’s no other way x

I know, whilst you are going through everything it's very easy to feel isolated. At least this website allows you to share experiences and see that there are other people in similar positions.

I've not tried Pregabalin - i was put off when the doctor said that it can cause you to gain weight and i've already gained 7 stone in 3 years due to inactivity because of the pain and fatigue. Have you requested to switch and try a different medication? I've not noticed that my memory function is any better or worse on the Gabapentin.

It's funny how everyone who seems to have this condition has multiple other conditions alongside it. I experienced vertigo for several years until I started getting treated with Levothyroxine for an under active thyroid - the vertigo symptoms disappeared in matter of days!

I feel quite fortunate that I am still able to get about but whether that is through sheer bloody mindedness I'm not too sure - I do often think of how nice it would be to just lie down in the street and have a rest when I'm walking to the bus stop to get to work. I sing a song repetitively in my head - "one finger one thumb keep moving" - it seems to help.

Keep at them blinking doctors and try different things - you never know, one day they may come up with actual solutions that help.

Good luck with everything and hope you have a few good days of feeling sane and remembering everything. PS the milk is probably in the microwave - check there first :-)

I was in the same boat as you!had all the tests everything fine I went onto nhs fibromyalgia pageafter months of investigating myself !I could instantly tell myself from my syptoms I went to drs and demanded medication for fibromyalgia or I wasn't leaving that was that horrible illness feel for you.Good luck

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