Hello! (Some questions about diagnosis)

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Hello! (Some questions about diagnosis)

Postby shoog » Thu Jan 16, 2014 4:50 pm

Hi all! I'm Lauren, I'm 27 and I'm from Scotland (I feel like I'm on Blind Date!).

I'm just signed up here - I don't have a diagnosis of Fibro but I have a (very strong) sneaking suspicion that it explains what has been happening for me. I can tick of every single symptom listed on any description of fibromyalgia and I have been tested for pretty much everything else under the sun. However this is where it gets complicated...

3 years ago I was diagnosed with Sarcoidosis, for those that don't know it's an autoimmune disease with some similar symptoms to Fibro, however unlike Fibro it can be diagnosed conclusively by biopsy (most people go through a cancer scare first, myself included). Officially my sarc has been in remission for 2 years. However before being diagnosed with it I had had symptoms for 8 years, the same ones I have now (11 years and counting). I feel like the doctors are being lazy, because they found sarcoid I truly believe they are just fobbing all of symptoms off on that but it doesn't make sense because I am not in a flare-up period. And for a lot of people (not everyone) sarcoid clears up and never comes back. It's either that, or it's chronic and lasts for the rest of your life. However according to the doctors I have no active granulomas (what causes sarc)... so what is causing my widespread pain, crippling fatigue, brain-fog, IBS-like issues, sensitivity to hot and cold when I'm touched etc etc. My mum has been diagnosed with Fibro and ME/CFS and I have been told there can be a genetic link.

I am sick of being fobbed off my doctors, and although I've said this before I am determined to get some answers (even though my anxiety normally means I clam up at the GPs and find it impossible to articulate just how bad I feel). This is ruining my uni career (2nd degree, for which I am paying everything myself) and I need answers.

I guess I'm here to ask for some help. How did you guys get diagnosed? E.g. did any of you think it was fibro before going to the doctors and did you bring it up before the GP? I'm anxious to do that because I don't want to be accused of "self diagnosing" but I feel like this needs to be addressed.


Sorry for the long post.
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Re: Hello! (Some questions about diagnosis)

Postby denys » Thu Jan 16, 2014 8:03 pm

Hi Lauren and :welcome: as you are probably aware we cannot say whether or not your symptoms are attributable to fibro, but some members have had suspicions before diagnosis and of them some have approached their docs complete with a list of symptoms and a current list of FM symptoms so they can compare.

A lot of members have been diagnosed by a rhuematologist but I would say it is becoming more common for GP's to be confident in their ability to diagnose and perhaps your GP may be in this group.

I would recommend making a list of all your symptoms and how they affect you and take this with you as this will counteract the problems you have with articulation and make sure you dont forget anything :-D :-D :-D

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Re: Hello! (Some questions about diagnosis)

Postby FluppyPuffy » Thu Jan 16, 2014 8:43 pm

:welcome: to our little piece of cyber Eden Lauren :cow-wave: :cow-wave:

It's good to hear your Sarcoidois is behaving itself so much nicely for you, the rest of your symptoms and problems flaring up will no doubt be making you want to :scream-1: :scream-1: :pull-hair: :pull-hair: :too-upset: :too-upset: as well as wanting to :face-slap: :face-slap: :face-slap: whatever it is that is behind them.

Before I was dx'd, I had no idea what FM was, I can't recall ever having heard of it until I was seen by the rheumy who dx'd me. I was just given a leaflet to read about it, then sent off on my wobbly way to basically get on with living with it. Unfortunately, just like the docs you've seen, there are dinosaurs like them thru~out the system, altho there are new one coming thru with a wider knowledge and experience of dealing with FM, so, whilst they may be slow, things are starting to move in a more suitable direction.

Wrt to getting some answers, there are a few things you can try doing to get things on the move. You can print up some info from a reputable site, go thru it all and highlight the various symptoms you experience. You could then go and see your GP and see what they think about the possibility of FM as a dx.

If your GP seems reluctant to consider it as a possible dx based on your lists of symptoms, you could go into things a little deeper and keep a diary for a while that includes what you have experienced and when, how intense it was, how long it lasted, what possible triggers were etc to help create that overall picture of what days can be like for you. Then go back and see what what your GP has to say about this approach.

Or, you could ask for a referral to a rheumatologist, or other suitable specialist that deals with conditions like FM to see if they can give you some answers.

I understand how anxious and worrying this can be, and how easily it can get you flustered and tongue~tied, so you could try writing down the various things you feel are important to your problems, then take your notes with you to your appt. You'll be able to use them as reminders/prompts for what you want to know and ask, or can give them to your GP to read, then see what they have to say about things. Hopefully it will be about getting you those answers to the questions you keep asking :fingerscrossed: :fingerscrossed: :fingerscrossed:

If these still don't get you anywhere, and you have seen all the GPs at your surgery, then you may need to consider changing to a different surgery. If you find yourself reaching this point, try contacting the surgeries in your area to see if they have any patients registered with FM, CFS/ME and/or other similar conditions. If they do, then ask them if there is a particular GP that sees patients with these conditions. If there is one, you can then ask about what would be involved for you to transfer to them.

As you've probably realised by now, this is a problem that an awful lot of people have experienced, and still are. Things are improving, but it is happening at a much slower rate than we would like to go at :facepalm: :facepalm: :facepalm:

Think I've waffled at you for long enough tonight. I hope there is something useful in my ramblings. Anything else that you're wondering about, just ask about it, and hopefully we'll be able to point you direction of a suitable answer :cow-wave: :cow-wave: :cow-wave:
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Re: Hello! (Some questions about diagnosis)

Postby shoog » Fri Jan 24, 2014 9:27 pm

Thanks for the welcome :)

My GP seems pretty certain it's Fibro and also ME/CFS. She's sent off another load of bloodworked but based on my medical history and the bloods I've had done in the past (all clear apart from inflammation marker during sarcoid flare-up) she's pretty certain on her gut feeling. So once the bloods are back she's going to refer me to a neurologist and back to the rheumy who diagnosed my sarcoid.

Fun and games :)

She seems very supportive though and has said a lot of really wonderful things I've never heard from a GP!
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Re: Hello! (Some questions about diagnosis)

Postby bandj » Sun Jan 26, 2014 7:58 pm

Hello Lauren,

I'm glad your gp is supportive. Hopefully you'll get a rheumy appointment soon.

I was recently diagnosed and felt so relieved that there was a cause for all my symptoms!

Hope you get some answers soon.
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