How important is diagnosis to you?

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How important is diagnosis to you?

Postby SchroedingersCat » Thu Apr 16, 2015 9:49 am

Just pondering this, while I should be processing some really boring work stuff (working from home today as having to stand on my commuter train 2 days ago has played havoc with my hips).

For me, my diagnosis was just a confirmation of what I suspected, but I wanted to rule out other things, so blood tests, X-rays, and confirmation by a physio, neurologist, and rheumatologist that there wasn't anything else wrong (MS being the one I was worried about) was all I wanted. As I have posted elsewhere on here, I've barely seen a GP or any other medical practitioner about my FM since the last rheumatologist visit about 3 years ago. So my diagnosis wasn't really the be all and end all for me, but I get the impression from many people on here that it's incredibly important to them.

So, what are your thoughts, folks?
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Re: How important is diagnosis to you?

Postby Queenie_70 » Thu Apr 16, 2015 10:22 am

Hi SchroedingersCat,

First of all, with a name like that, were we diagnosed, or not...(lol). Anyway, my pain started in my hands and so the GP wanted to make sure that I wasn't developing Rheumatoid Arthritis. We went through x-rays, blood test, an eventually had the pain point test done. I am old school so at that time it was only 8 points, but I hurt on all of them.

I didn't connect the fatigue or any of my other symptoms to it as I was told I had Fibromyalgia and sent home. No follow-up, no medication, no questions on if it is affecting my life. It has taken me years to get others to help.

So a diagnosis didn't help me because there was no help given. It was a label to my pain, but not an answer. Of course I now know there really isn't an answer, each individual has to be treated just like that, an individual.

I hope this made some sense...running on flat batteries today.

xxx
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Re: How important is diagnosis to you?

Postby Estella » Thu Apr 16, 2015 11:07 am

Hi everyone
I havent been diagnoised ....well I dont think I have...still not sure really lol...anyway I feel I have been fobbed off really ...been diagnosed with tendonitis and treated for that but at the time couldnt understand why i had all these other things ....anyway i had never heard of firo and after reading up on all my symptoms i suspected i could have it ...my GP thought the same...he sent a letter to the specialist and on my last appointment ...which i saw the nurse....again ...she didnt even have the gp letter in my file ...she was ready to just fob me off again but i said i wasnt happy and could i have something else..she wasnt happy at my self diagnosis ...but went to see the doctor in the next room and came back with a pamphlet on fibromyalgia ...and said it could be possible and they were going to send me for a scan on my thumbs .....so not any wiser really ....if i have got it i just would like to be diagnosed as then i can deal with it ...and not think its something more sinister...
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Re: How important is diagnosis to you?

Postby SchroedingersCat » Thu Apr 16, 2015 11:11 am

Hey Queenie

I knew all about FM before I started to realise it might be what I had, as I have friends who suffer. However I've also had friends with MS, one of whom died very young, so I was quite keen to make sure it wasn't that. Since I already knew what my treatment options were (i.e. not much other than drugs) I didn't bother with any follow up. So far I've managed without medical intervention, and long may it remain so, but I do realise I'm an exception in the FM community.

SC (or not)
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Re: How important is diagnosis to you?

Postby MPSGuy » Thu Apr 16, 2015 12:32 pm

I'm not sure a diagnosis is all the helpful really. Basically you go to the doctor telling them you have chronic pain and fatigue and they rule everything else out and label it Fibromyaglia. There are no good treatments and half the medical profession don't really believe in fibromyalgia as a diagnosis anyway.

It is helpful to have other disorders ruled out, like Lupus, Inflammatory arthritis, hypothyroidism, etc, but being told you have fibro doesn't really leave you any close to finding a cure.

I suppose it is useful to be able to give family/friends/colleagues a reason for the pain and fatigue. And if you want to apply for flexible working hours or benefits then the diagnosis (as such) is important.
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Re: How important is diagnosis to you?

Postby Genevieve489 » Thu Apr 16, 2015 1:45 pm

I did feel that the diagnosis was important to me. I had mentioned the possibility of fibro to one of our practice nurses 18 months ago, considering the way I was feeling. But she dismissed it as not a real illness. So I've had over a year of pain which seemed more than the pain of the osteoarthritis and hip bursitis I was suffering from. It was a revelation to me that the shooting pains I have all over, particularly in my hands and feet, were symptoms of fibro. So, even when my GP suggested it, I still wasn't convinced, especially after my experience with the practice nurse.

It was only when I saw the rheumatologist and she diagnosed fibro that I felt able to come to terms with it. Having the diagnosis meant that I was able to think positively about the best way to manage it and also meant that I could discuss things with my GP knowing that it was an official diagnosis and I didn't have to keep repeating the same list of symptoms over and over - if that makes sense. We're all different, but having a name for the pain and fatigue was very helpful to me.
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Re: How important is diagnosis to you?

Postby Roger Rabbit » Thu Apr 16, 2015 2:14 pm

Hi all, I am so glad that you have bought up this topic SC. It's one that I have wanted to bring up for a while but with a slightly different twist and I am going to stick my neck out here. I sincerely believe that a lot of people are misdiagnosed with Fibro and this leads scientists and doctorsto be mislead by patients pain scale and their mobility. It is in my opinion that even in early onset of Fibromyalgia the uncomfortable pain from walking and everyday tasks is enough to stop you from be able to think about going out to do a physical activity i.e. exercise (whatever form it may be). It isin my opinion and also goes against many doctors theories that people who can exercise with Fibromyalgia have not got Fibro and have been misdiagnosed.

I haven't meant to offend anyone, but wanted to see what other people thought. It's not that I am one of those poeople who hate sport, quite the opposite my family loves sport. My brother did motorcross and I did ice-skating, it frustrates the life out of me that I am now in a wheelchair. Reseach into Fibro is something that I enjoy and keeps me quiet for a bit!

I would be interested to hear what you think, I know queenie will have something to say! xxx
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Re: How important is diagnosis to you?

Postby SchroedingersCat » Thu Apr 16, 2015 2:34 pm

I've had this thing that has been diagnosed as FM by 4 different medical practitioners for some years, and I think it really started to ramp up during 2010, though if I think back, the aches and pain started before that, I just put them down to getting older. I continued to live a normal life, and still do. I started running again a few weeks back. I have enough pain to make me consider staying in bed every day, but I don't, and the moving doesn't seem to make things any worse - indeed, holding one position for long periods, eg my commute 2 days ago in an utterly overcrowded train standing for 25 minutes unable to change position even slightly, is much worse. However, as I've said repeatedly here, I have NO other medical conditions, I'm otherwise a very fit and healthy 49 year old, I can only assume FM is made worse when you have other issues too. I do seem to be one of a very small minority of FM sufferers that has been able to continue to exercise, work full time, keep up with their hobbies, run a house, etc etc, several years into this condition. If it's not FM, I'm at a loss as to what else it is, as apart from the severity, I have pretty much all of the symptoms that go with the condition......
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Re: How important is diagnosis to you?

Postby Roger Rabbit » Thu Apr 16, 2015 3:03 pm

HI SC , Roger Rabbit here. Just read your post. Find it really interesting, is it painfull when you run? If you don't mind me asking when you clean the bath do you have pain when you clean the bath? push the hoover round? if so could you score it 0 none 10 high to give me a rough idea.

Thx SC, From the rabbit! x
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Re: How important is diagnosis to you?

Postby SchroedingersCat » Thu Apr 16, 2015 3:13 pm

Hi Rabbit,

yes, it's painful when I run. I have pain when I lie down, pain when I sit up, pain when I clean the bath, pain when I push the hoover round, pain when I breathe some days. I cannot honestly remember the last day I had without pain. Most days I have hip/leg/lower back pain on my left side which, using the pain scale here http://www.healthcentral.com/chronic-pa ... 768-5.html for clarity, generally runs at around a 4-5. For the last 2 days, after standing on the train as per my earlier post, it has been running at a 6. It's rare that I get to a 7, and I only get 8s for a few seconds at a time, thank gods. A really good day, which is usually after lots of good nights' sleep in a row plus warm days plus lots of moving around (e.g. working in the garden, or walking the dog long distance) can see me drop down to a 3. I also have plenty of other random changing pains, e.g. right shoulder (generally at a 4 or 5 but mercifully at a 2 for the last few days), forearms, knees, and interesting stabby pains that can have me doubled up for a minute and then vanish.

However, my pain scale changes over time. Pain I currently rate as a 6 would have had me in bed crying a year ago.

Hope this is helpful?
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Re: How important is diagnosis to you?

Postby Queenie_70 » Thu Apr 16, 2015 5:26 pm

I would be interested to hear what you think, I know queenie will have something to say! xxx[/quote] :crazy:

Oh dear, do I have a reputation...I hope that is a positive :) :yikes:

RogerRabbit,

To answer, or to comment on your thoughts, I feel that you are probably partially right. I think that there are many who are labeled with Fibro, because it is an umbrella diagnosis. A bit like Autism, there is a sliding scale and where you are on it will determine how active or inactive you are capable of being. My daughter is Aspergers, so high functioning Autistic, but with Schizoid tendencies, which cancels out the high functioning part. :banghead:

Fibromyalgia is a series of conditions/symptoms, and depending on that sliding scale of what you may have, or may not have, will determine whether one cancels out the other. Also, if you develop more symptoms along the way, which can also cause distress and problems. Then, just because we are such fun people, you can add other diagnoses along the way that exacerbate your original condition, Fibromyalgia. :pull-hair:

I know in the States, (where I was diagnosed), more and more doctors, at least for a while, were using Fibromyalgia as a diagnosis because they often get paid to recommend and prescribe pain medication. So it is beneficial for them to do so, money in the bank. It is also a way of "shutting up the annoying patient" who has nothing credibly wrong with him/her. :shooting:

I think Fibromyalgia has been given a bad rap, and maybe doctors haven't helped themselves, but I wouldn't go as far as to say that a diagnosis of Fibromyalgia means that one cannot exercise, but a determination of where they are on the sliding scale would shoe if they are capable of exercise.

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Re: How important is diagnosis to you?

Postby Zia2014 » Thu Apr 16, 2015 5:58 pm

I think the main problem with a Fibro diagnosis is that as you say, it is given to people when everything else is ruled out. To me that makes it open for misinterpretation. I still have days when I wonder...

Anyway, to answer the question.... :mrgreen:

For me the diagnosis was important, mainly for two reasons:

1) This pain I had was not 'all in my head'. Believe it or not I spent a long time thinking it might be, even when I couldn't get out of bed. I doubted myself. For someone medical to actually tell me there was something wrong was a relief. And also to check I didn't have something like MS which I was also worried about.

2) To access further care. It seems that's not the case for all and that's a shame. In my case I researched the hell out of all local help and realised that to access the Pain Clinic (through which I get hydro, tai chi, a management programme, CBT...) I HAD to have a diagnosis. So I even took the option of having an earlier appt out of county to save time and get it done.

I appreciate that my reasons aren't the case for everyone, but in other situs, for instance to get help from Occupational Health/HR (at work) or local council services (for eg) outside of work, really you need to be able to tell them what is wrong with you. So I think it is still important to get the diagnosis, even if you don't think it will do anything for you. There's no harm in getting it, after all.
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Re: How important is diagnosis to you?

Postby Butterfly8588 » Thu Apr 16, 2015 9:36 pm

Having a diagnosis was extremely important to me, I dont mean I wanted to be diagnosed with fibromyalgia, I just wanted a reason for the way I was feeling no matter what the name of it was. In my mind I was completely cast adrift for several years bouncing from drs to neurologists to pain management specialists (and I use the term loosely!). I had no idea what was happening to me, if it was causing damage to my body and, more importantly, would it get worse? You can't accept what you don't understand.
I liken it to meeting a stranger, you're always weary of them until you know their name and a bit more about them. When I got my official diagnosis (and I found out about it by accident and mentioned it to the dr) I read up on it and stuff made some sense to me, where other bits didn't but I could start to understand what was happening. With understanding could finally come acceptance.
I was very lucky that I had a supportive family around to help me and who believed me when i said I was in pain/tired etc. I cant imagine how important a diagnosis must be to people who dont have that, at least they can finally explain.

Gentle hugs xx
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Re: How important is diagnosis to you?

Postby carolad » Thu Apr 16, 2015 10:56 pm

Interesting question :-)

I would say not remotely important in my case. I still don't know if I actually have fibromyalgia...I am thinking more and more that I don't, so even though I have got the diagnosis, it is meaningless to me. I think my pain is all scoliosis-related, though I don't have another explanation for the fatigue. I have a gluten intolerance though so I do wonder if the fatigue is part of that, or related to another food intolerance/allergy/vitamin or mineral deficiency....

Not knowing for certain what is the real cause of my problems annoys me sometimes, but mostly now I just accept that I am the way I am and it really doesn't matter what 'label' you put on it. Whatever the cause, I have pain and fatigue and I have to find a way of managing both of these things.

Zia2014 makes a good point though about needing a diagnosis to access treatment, help at work etc. In my case, having a diagnosed medical condition allowed me to reduce my hours at work, with support from the Occupational Health doctor. Though the diagnosis he used was the scoliosis one, rather than fibro. So I suppose if I hadn't had scoliosis, it might have been more important to me to get a diagnosis of fibro...
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Re: How important is diagnosis to you?

Postby juliem » Fri Apr 17, 2015 10:13 am

I'm glad for the diagnosis but like the poster rarely see Dr about Fibro. I've had other health issues, hysterectomy etc but Fibro only ever in passing. But the initial diagnosis did explain a lot.
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