Getting A Diagnosis of FM

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Getting A Diagnosis of FM

Postby Woofwoof » Fri Jun 15, 2012 8:19 pm

I hope I posted this thread in the right section - if not please feel free to move it!!

I've suffered with CFS (Chronic Fatigue Syndrome) for the past 17 years, having finally received a diagnosis back in 2000. Up until then the diagnosis fitted with my symptoms, which are very similar to FM. However, recently I've notice my joint/muscle pains are much worse and are constant, and I get pain where I didn't before - the newest (and most concerning) is in my hips - either constant pain or sharp, stabbing pains. Other new symptoms are numbness/pins & needles/burning in my legs, feet, forearms and hands - but worst in my left foot and leg. The pain in my teeth, jaw and gums is almost constant too and is in addition to the TMJ issues I've suffered with for years. I constantly feel flu-like - again that could be put down to the CFS - but now I also get a constant feeling of having a fever, even though I can feel cold at the same time too but am also constantly feeling clammy. I've become more sensitive to noise than ever before. I have environmental allergies (especially perfumes, fragrances, pollen and cigarette smoke) and also skin allergies and can react to irritants in a matter of minutes with rashes and dryness to the point my skin cracks and bleeds. I also suffer with IBS and urinary symptoms. I literally could be here all night trying to cover all my symptoms... :-?

I recently visited a chiropractor with a view to getting treatment for my aches & pains, and - after checking for "tender points" on my body, I had 14 of the 18 recognised points - he suggested to me the possibility I MAY have FM as well as CFS. To that effect I've got an appointment on Wednesday with my GP to request a referral to a rheumatologist, who I believe would be able to confirm whether or not I have FM. What I would say is my GP can be dismissive at the best of times and is hung up on "psychosomatic" and "psychologically driven" symptoms, which is frustrating at best, and at worst.... :(

So - opinions please. Do these symptoms sound similar to your own symptoms? Do any of you guys have a diagnosis of CFS and FM as well? Any other help or suggestions would be great - I'm really up against it at the mo and hopefully in clarifying the sitauation my treatment can be amended so as to cope with my new (and existing) symptoms.

Thanks for reading and I look forward to your replies.
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Re: Getting A Diagnosis of FM

Postby *Lisa* » Fri Jun 15, 2012 8:27 pm

Hi & :welcome:

I have CFS & FM

My advice would be to get the chiropractor to write a letter confirming his tender point examination and possible fibromyagia diagnoses. The GP will then have to forward you onto a rhumatologist.

It does sound like you may have fibro to althought CFS symptoms can overlap alot.

One of the main symptoms is chronic stiffness especially mornings. The TMJ i also have which is a fibro associated condition.

Fibro people like myself can be very hyposensitive to noise/smells/lights and so forth.

Living with fibro is very simular to CFS lots of pacing and resting and learning your limitations.

I hope your GP helps you and sends you for further investigations

:goodluck1:
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Re: Getting A Diagnosis of FM

Postby FluppyPuffy » Fri Jun 15, 2012 10:03 pm

Not much more that I can add, Lisa has summed it up far better than I could have, saves you having me waffling again :clap: :clap: :clap: :clap:

Hopefully your GP will listen and be open to what you have to say and make the relevant referral(s) for you.

Apart from having the tender points checked, the route to a dx of FM is one of eliminating other possible conditions, so you may be sent for any tests/scans etc that are felt necessary to find the reason for your change in symptoms and appearance of new ones.

Hopefully it won't be too long before you get some answers :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: Getting A Diagnosis of FM

Postby Woofwoof » Fri Jun 15, 2012 10:13 pm

Oh noooooo - I just typed a HUGE reply and it didn't post properly and I've lost it - sorry!! I'm too tired to reply again now, will reply tomorrow morning.
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Re: Getting A Diagnosis of FM

Postby FluppyPuffy » Fri Jun 15, 2012 10:33 pm

Sounds like you've met our resident Gremlins :scream-1: :pull-hair: :too-upset: :swear1: :swear1:

Depending on which browser you are using, it is possible to find the missing reply. If you're using Firefox or Chrome, using the back button can take you back to the page where you typed your reply. If it's still there, clicking submit should post it. I mainly use Chrome and tis has hapened to me on numerous occasions, being able to go back and resubmit it is far better than having to retype it. It doesn't work with IE tho, when you use the back button, it just tells you that the page has expired :waiting: :waiting: :waiting:
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Re: Getting A Diagnosis of FM

Postby Graciebaby » Sat Jun 16, 2012 12:15 am

Hi,
I have both ME/CFS and Fibromyalgia.
I had my diagnosis via a rheumatologist 18 months ago regarding my ME. He told me at the time that I was certainly suffering from ME, but I didn't have the pain points for Fibro, but still referred to my condition as chronic widespread pain.........I never quite figured that one out!
The pain has been so bad recently in my hips, shoulders and base of my spine that I was referred to another rheumy (my GP hoped that x rays would be performed to rule out the possibility of an arthritic condition) A thorough physical examination by the second rheumy revealed 15 Fibromyalgia pain points.
So, what I'm trying to say is that getting a firm diagnosis really depends on the individual consultant.
Unfortunately thanks to my first rheumatologist, I've been without decent treatment and pain medication for 18 months.

You also have to consider that with both CFS and Fibro, symptoms fluctuate. Some come to the fore and others recede for a bit. Pain moves around, for example, my hips are really dreadful at the moment, but a couple of months ago, the pain at the base of my spine made me want to scream at times. There's a lot of cross over between the two conditions and it can be very difficult to determine what causes what. The bottom line though is that if you do get a diagnosis of Fibro, at least your meds will be more likely to cover all bases!
You may also be offered additional support such as the opportunity to attend a pain clinic, physio etc.
Having a firm diagnosis of Fibro may also assist in claiming benefits if you are too unwell to work.........well at least that's what I'm hoping having claimed ESA and DLA whilst only having evidence of a diagnosis of ME but subsequently having additional evidence of a further chronic pain condition.
The suggestion that you get a written report from your Chiropractor regarding the Fibro pain points is a really good one. If your GP is a bit cynical about the condition, this might help to support your request for a rheumy appointment.

I really wish you the best of luck with everything and would be very interested to hear how you get on. Please post back on here with an update :-)
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Re: Getting A Diagnosis of FM

Postby Woofwoof » Sat Jun 16, 2012 10:24 am

Yup I certainly did meet the resident Gremlins - and somehow none of those emotis quite cover it!! :-| Never mind, I will try again - but intend to copy the text before I post this time...

Hi Lisa and thanks for the welcome!! :-D

I'm aware the symptoms of CFS and FM overlap alot, and I think that that's what has muddied the waters recently - but if I went on my gut feeling I do believe I have both conditions.

The advice re a letter from the chiropractor to my GP is a really good idea - thanks!! My chiro is a really decent guy who really wants to try and help me out and I'm guessing he'd only be too happy to help. My doctors appointment is on Wednesday so that gives me some time to contact my chiro and get something sorted.

I do have issues with chronic stiffness - my hands right now typing this post - AGAIN!! ;-) Seriously though, when I wake in the morning the stiffness in joints and general aches and pains and fatigue means it can take me an hour to get out of bed - as it did this morning - then I head straight to the kitchen cupboard for painkillers. :-? In a morning my jaw is often very stiff, more so than in the day) and always cracks (loudly - nice!!) when I open my mouth.

I'm ridiculously hypersensitive to noise at the mo - more so than for the longest time - I live in an apartment and sometimes the noise from neighbours honestly feels like it will drive me insane!! I am affected by smells/scents too but always have been since I've had CFS - I can smell a cigarette at a million paces - no joke!! Lights are an issue too - especially fluorescent lights, it's the flicker maybe??

I'm used to the concept of pacing and resting, but at the mo my pain and fatigue is sooo bad it's unrelenting and it's really grinding me down - I guess that's why I want to clarify the FM issue, with a view to getting appropriate pain relief.

FluffyPuppy - Wafffling? You? Never!! ;-)

After recent (bad) experience with my doctor, believe me she WILL listen on Wednesday - I'm not taking no for an answer. And what I would also say is I've recently been referred to the CFS clinic, and as such just about all other conditions have already been ruled out.

Graciebaby - our symptoms sound very similar at the mo - the pain in my hips, shoulders and lower back has been ongoing for months and is at times unbearable - especially my hips.

I appreciate what you say about different rheumatologists and a diagnosis - my chiro identified 14 tender points - so I hope that's confirmed by the rheumatologist and we can get somewhere with a diagnosis and pain relief.

I'm aware about the pains of CFS shifting around and coming and going, but at the mo things are just so bad and "different" that it led to my chiro appointment and then the suggestion of fibromyalgia.

I'm curently unable to work and have been for almost all the time I've been ill.

Thanks for advice and well wishes (is that the term??) and I will definitely keep you updated.

Now, I'm going to copy this text then attempt to submit my post - fingers crossed!!
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Re: Getting A Diagnosis of FM

Postby Woofwoof » Wed Jun 20, 2012 6:22 pm

So I'm just back from my doctors appointment, and it's been positive on a number of levels. I explained to my doctor that I didn't need to familiarise her with my A-Z of symptoms and she agreed. I mentioned that the last time I saw her I mentioned my pain was very bad, I was getting numbness/pins & needles/burning pains in limbs and other symptoms were bad too - and as a result I'd seen a chiropractor who, long story short, recommended I be referred to a rheumatologist. I also had a letter to my doctor from said chiro to that effect.
She started off by saying that CFS/ME/FM etc are all overlapping conditions, to which I agreed. She asked if I'd been referred to a rheumatologist before and I said no. So she checked the results of my latest blood tests pertaining to the numbness & pain - she said the tests for B12 and folate (related to the numbness issue) were fine and that my inflammatory markers "were down". She asked where I felt the pain worst so after I described my general pain as feeling like I'd been "hit like a truck" I pointed out various areas where my pain is very bad. She then told me she would be happy to refer me to a rheumatologist. I thanked her and said my main reason for wanting a referral was for receiving pain relief, at which point she asked me what I took so I explained I took Anadin & paracetamol (separately) depending on the pain but neither of them do the trick. She then said she would prescribe me anti-inflammatories (Naproxen) to see if they would help with the pain. I was a bit perplexed and questioned why she would prescribe anti-inflammatories for possible FM related pain, and she said it wan't for the pain as such but diagnostic - if they work for me and reduce the pain it's indicative FM may not be the issue, if they don't work it's more likely FM is the issue. I agreed to go along with it, knowing my inflammatory markers "were down" on my last blood tests I can't see the Naproxen can help. She asked me to let my rheumatologist know if the Naproxen helped or not.

I've got to say she was very helpful & empathetic today, and I feel by the end of the appointment we both feel we'd actually gotten somewhere - and no mention of "psychologically driven" symptoms - result!!

Any comments/observations on what I've just posted would be much appreciated.
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Re: Getting A Diagnosis of FM

Postby denys » Thu Jun 21, 2012 1:04 am

Sounds like a good appointment (though her reasons on the Naproxen after viewing your blood results is a little baffling but heyho) hope you dont have to wait long for your appointment to come through :fingerscrossed: :fingerscrossed:
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Re: Getting A Diagnosis of FM

Postby Woofwoof » Thu Jun 21, 2012 10:01 am

Thanks Denys...

BUT what do you make of the Naproxen thing? Am I right thinking anti-inflamms aren't the answer for FM type pain? She's advised me to take the Naproxen alongside paracetamol, but I'm thinking the combo may indeed relieve pain etc (if not completely) and give a false result?? And the last thing I want is a false result affecting the outcome of my rheumatologist appointment!! :-?
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Re: Getting A Diagnosis of FM

Postby TATT » Thu Jun 21, 2012 11:55 am

You know Woof I get where your coming from as you need the diagnosis and the validation. But why not try it and see. I was seeing another rheumy last week and got myself in a right pickle thinking he might say I don't have FM even after 2 consultants diagnosing me. Follow your gut instinct.

I think you know what you have and stressing will make it worse. Try the pills as the rheumy appointment can take months.

I hope you get your answers and relief sometime soon

TATT xxx
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Re: Getting A Diagnosis of FM

Postby Woofwoof » Thu Jun 21, 2012 2:24 pm

TATT - thanks for your reply and I totally get where you're coming from. What I would say is I started taking the Naproxen last night and intend to stick with them for the fortnight that my doctor suggested. I do have a gut feeling that I have FM, but I guess I just don't want anything to "muddy the waters" so to speak and for that to affect the outcome of my rheumatologist appointment!! :-?
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Re: Getting A Diagnosis of FM

Postby denys » Thu Jun 21, 2012 3:08 pm

Dont worry about it confusing the outcome, all your test results etc. will give them the answers you are indeed correct that it is thought that FM does not cause inflammation. BUT some people on here (myself included) get swollen joints etc and I take diclofenac when needed and they do help some what so give the naproxen a go and as TATT said try not to stress over things hopefully things will be a lot clearer soon :hugs: :hugs:
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Re: Getting A Diagnosis of FM

Postby Woofwoof » Fri Jun 22, 2012 10:49 am

Thanks for that denys.

Yesterday was a baaad day!! :( I felt groggy all day, fatigue & muscle weakness were worse than ever and as a result spent most of the day in bed - and to top it off my mood was absolutely flat, I felt REALLY down all day. I checked the information leaflet for the Naproxen and they are all common side-effects - looks like I'm out of the frying pan into the fire!! :-? I ALWAYS seem to react badly to meds, have done ever since I came down with CFS way back in the day.
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Re: Getting A Diagnosis of FM

Postby Woofwoof » Tue Jun 26, 2012 3:49 pm

Good news and bad news...

Good news - I got a date for my rheumatologist appointment, Tuesday 7th August - that's 6 weeks today!! :-D

Bad news - I had to stop taking the Naproxen because it was just making me feel sooo ill - nauseous, even more fatigued, even more muscle fatigue and my mood was totally flat!! :(
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