Medical attitudes?

I was diagnosed in November last year. The Rheumatology Consultant raced through his comments including congratulating my research! And then I was discharged! As I've said before, I attributed pain to my spinal condition but could not fathom the fatigue? As I researched and discovered FM I identified with the symptoms, it began to make sense. So far so good...or is it. I'm interested to know others' thoughts and feelings re how they were diagnosed? Whilst I'm relieved to have an explanation, which was what I sought, I nonetheless feel rather abandoned. I get a sense of not really being taken seriously and that FM isn't taken seriously either? Tests are performed and where there is no other explanation, the default outcome is FM? Is this a means of quietening us down. My GP said that FM is very common. He didn't really ask me very much and never examined me. It's as though it was up to me to progress matters. Just feel fobbed off. My spinal condition is clarified to an extent (differing opinions and lack of research). My rehab Consultant insisted all my concerns could be explained by this but I begged to differ. I don't want more problems but I do want answers. We all need to know, then we can accept and deal with things. Sorry to go on.

37 Replies

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  • I found be diagnosed with Fibro a relief. I had searched for answers for years and eventually my rheumatologist explained I had more than one problem which he continued to list. He did check me for any other problems very thoroughly over a three year period. Then I was put into are in the community -got to laugh- so my GP really great man is now looking after me.

    Like so many things we now have to look after ourselves they help with pain relief and sometime OH and physio!

    This site is amazing everyone helps each other and can offer experience and empathise with each other but remember always talk to you doctor if you are not sure or want to confirm what you are trying.

    info@fibroaction.org will give help on many topics and a good site to trail through - it is our parent site.

    There is always some one on line ready to chat good luck

    xgins

  • Hello and welcome, I was dignosed in 2011 when my doc set me to see a rhumy after all the tests came back negative. I was then told that you have fibomyalgia. You will have good days and bad days. Nothing else. Luckyly I already knew abuot it, I`d come accross it accidentay when looking up RSL I can say that due yo my own research i poably know more than my doc and the people on this site have helped me learn a lot more. Iam giving up now my brain has lost it`s dictionary :) ...see you soon sue

  • Hi sniffer

    Firstly welcome to the site and I hope you find it useful here where you are not alone with your illness and the issues that come with it. We're a friendly bunch that like to care and share and hopefully you'll get some useful replies and advice.

    If you click on the butterfly on the right right of your screen it will take you to the FibroAction website where you can access up to date research to help with your own mission for answers. Like you I thought everything would feel fantastic once I got my diagnosis after being sent from pillar to post for years. I'd self diagnosed fibro before being diagnosed by the rheumy in March last year after a couple of years researching.

    I was told there was no point giving me any more meds as I was already taking the appropriate medications and I'd also been through pain management -without a diagnosis! (that was a lucky thing for me) I was referred back to see the pain consultant who said it would be insulting for me to go back through pain management and also because of the combination of meds I was taking it would be a very difficult and long process to try new pain meds :o I can kinda empathise feeling like you've just got to get on with it and maybe they think that that is what you're doing as you were so knowledgable about the illness.

    On the other side of the coin we need to be clear to our doctors about how we feel and what we need, if they cannot provide it they should provide you with info as to where you could. For instance my GP showed me on his computer the fibro websites such as fibromyalgia uk and is understanding - I'm sorry for everyone that they can't have my GP

    Keep strong and believe in yourself sometimes you may need to be abrupt in a tactful manner to push forward but hey! we all need to so you're definitely not alone

    Sending warming fluffies infused with sunshine to help keep your day bright

    :) xxxsianxxx :)

  • Hi there Gins is right anything medical talk to your doctor and don't forget your have the right to say, please this is my illness and I don't understand what you do im trying to come to terms with it can you help me. If im wrong please forgive me but fibro is a bitch its confusing and hard to grasp some days but over a period of time I have come to understand what leads to lots of pain and what helps to minimise it. I went to a fibro management group in my opinion it tops all the pain management courses just in that it personalises fibro which is the thing that hinders me the most. Fibro to me is so changeable and varying that its not only confusing at times its like overload and increasingly can be exhausting in turn. I only hope that im identifying with you and you don't feel its all you, fibro is a bitch and when you come to learn more in time a good medication can lower the possibility of pain but how we manage our stress can flare or lessen our pain. or exhaustion its a fragile journey learning it too. learning to do this believe you me its an art. Well im abut to ramble so hope this helps xx

  • Hi,

    welcome. You have landed on a site that will give you support and information. I think it can be hard to accept that there are no answers that make sense to us. I would suggest going to your GP and asking questions and also for help. If pain is a major issue, ask if you could be referred to the Pain Clinic. I was and I was sent on a fibromyalgia management course which gave me both support and information.

    Hugs

    Jillyxx

  • Hello Sniffer8,

    Interesting post about medical attitudes. I was diagnosed after 2 years of waiting due to my suggestion having researched symptoms and now I'm 8 years on. During this time I've found that I've had to be fully aware of my own condition and assertive in my needs with the medical profession.

    Many people when diagnosed seem to be left floundering, wondering about Fibro. In fact we had a poll on here to see what information people were given, here's the link;

    healthunlocked.com/fibroact...

    It shows that many are left to research the condition themselves, which leads me to wonder as the information is out there why have a good proportion of Health Professionals not read the up to date evidenced based information. You expect GP's at least the ones that have patients with Fibro would do a little background reading if a person keeps coming to them for help and they are unaware how best to treat them.

    Is there still a big proportion who believe it is a wastebasket diagnosis and therefore haven't read any research about it ? Is it because some believe it is Psychosomatic despite the Neurological research and fMRI results? Is it because there is no diagnostic test? Is it because it is invisible and the symptoms subjective?

    What is the barrier that is stopping this increased knowledge & understanding ? It is not because the information isn't there, because we've all read it !

    Listen to me rambling on, but you are right to ask this question and I wish we had an answer.

    FibroAction are working hard to raise awareness & challenging wrong ways of thinking about Fibro. We have evidence based information on our website about the key findings in Fibro & recommended treatments.

    fibroaction.org/Pages/What-...

    If you would like to put up our posters at your GP surgery or local hospital please do email me for an Awareness Pack, info@fibroaction.org.

    Maybe together we can raise awareness, change opinions and break down those barriers !

    I look forward to reading others comments

    Best Wishes

    Emma :)

    FibroAction Administrator

  • I enjoyed your ramble Emma and agree with what you say.

    Also. 'Pyschosomatic' is a word I'd like to chuck in room 101 because I heard it that many times, especially during the 1990's. It is such a demeaning descriptor and really insulting and I know I've cried many rivers as a result and then ended up depressed too so the next time they'd see I'd been getting treatment for depression and say............. guess what!?!

    GRRRRRRRRRRRRRRRRRRRR sorry Emma my turn to ramble, eek!

    I'd like to think that time has moved on from that and it's different now but from some of the things I've read here I'm not so sure it is actually different :( :( :(

    Apologies for the little rant Emma and sending warming fluffies infused with sunshine to help keep your day bright :)

    :) xxxsianxxx :)

  • Thank You for your comment, we had a Room 101 post on the community a while back, perhaps you would like to suggest 'Psychosomatic' for it ! Here's the link;

    healthunlocked.com/fibroact...

    Others may decide to add their Room 101's too :)

    Emma :)

  • Cheers Emma :) :) :)

    Feel better already :D

    :) xxxsian :)

  • I`ve just watched 3 adverts for painkillers, vitamins and probiotic drinks Apparently if I take these products I will be in with a good chance of winning the London marathon, Sometimes I feel like throwing something at the TV. Room 101 please?

  • its where you throw all the things that you don't like or irritate you :D It was a tv show too

    Go for it sue :) I would click the link above :D

    LOLOLOL

    we'd all be super duper fit wouldn't we LOL

    yeah right!!

    chuck the adverts in there too xxx

  • Room 101 started in the novel 1984 by George Orwell. It was a punishment where each convict met their worst fear. For our protagonist Winston Smith it was rats.

  • Cheers for that Paul I never knew that!

    I've never read that book :o :o :o

  • You're welcome. I would not recommend it. It's a bit grim. We did it at school. It's also the origin of the phrase "Big Brother is watching you" from where that TV series gets its name.

    Did you have a good sleep, I just managed 30 mins. :) :)

  • I knew about big brother and I think we read something like 'Lord of the Flies' instead of 1984.

    I managed 2 hrs snoozing which normal nap time for me, though I was rudely woken from it so could have slept a little longer :o

    Been watching the olympics :D :D :D

  • Sometimes I'm glad I live alone!! Countryfile for me :)

    LOTF was another deep and meaningful

  • LOTF?? what's that?

    It was only my friend wanting to double check that he could take some straw and goodies for his friend's daughter's who have a bunny :)

    Deep and meaningful when??? LOLOLOL

  • Just call me a loon ;)

    I get the code now!!! hahahahah

  • Hehehehe saves me spelling it out. I was sure you would get it or I would not have done the abbreviation. . :P :P

    we touched on it at school but it wasn't required reading.

    Food for bunnies is forgiven. Glad you didn't use the "R" word. Bad luck on Portland and they have enough right now :(

  • :(

    I've been to Portland as a child It was cw&m in the summer and the waves were high and crashing :o

    Hope tomorrow isn't too teeth grinding :D

    I'm off to watch musketeers now :) aw the hammies are up:)

  • Bless. I'll tell you about the pet rat on our nature reserve when I have the strength. nite :) :)

  • Don't tempt me :P :P

  • Is it in my head, or is it real? GRRRRRRRRRRRRRRRRRRR for this too.

    And look at my portrait. There's real teeth for you :D

  • LOL I see your GRRRRRRRRRRRR

    badger does GRRRRRRRRRRRRRRRRRRRRRRR superbly :D

    I chucked it into room 101 yesterday and felt fab afterwards :p :p :p

  • Hehehehe. Like a badly fitting bra, it's good to get it off your chest! :P

  • chortling at that not chuckling.................. chortling :D

    can I put bras into room 101 as they're all ill fitting and hurt too much so always good to get off the chest :D

    :p :p :p

  • I assume so. Glad to put a smile on someone's face. :P :P :D

  • I have been doing some research and have found quite a lot of American FM research that indicates that FM is related to the central nervous system. If so, why are we getting referrals to rheumatology as opposed to neurology. I did not feel that my rheumatologist listened or did a thorough exam. She more or less checked for nodules but did not check the physiology of my gait or how my two hand do not work together. See the research included in this link:

    fmnetnews.com/fibro-basics/...

  • Hello Milynda,

    It's great that you've been doing research however we FibroAction produce evidence based information here in the UK, please do browse our website;

    fibroaction.org/Pages/What-...

    Our information team our currently looking to up date the information once again as per the Information Standard so do watch this space ! :)

    theinformationstandard.org/

    Why are we not referred to Neurologists is a good question, in my personal opinion (no FibroAction hat on) this could be for many reasons, some suggested below;

    *it's classification by the World Health Organisation of Fibromyalgia, see below

    who.int/classifications/hel...

    *the need for more research to confirm these Neurological findings that will satisfy the Medical Profession doubts about Fibro, as until this happens will Fibro be taken seriously by Neurologists?

    *the need to dispel people's perceptions that it is of Psychosomatic cause

    *the diagnostic criteria is outlined by the American College of Rheumatology

    *probably due to the other conditions that are diagnosed by Rheumatology that need to be eliminated before the diagnosis of Fibro

    fibroaction.org/Pages/How-I...

    I would be interested to hear others thoughts about the discussion between Neurologists V's Rheumatologists, or whether they've had positive or negative experiences with Neurologists?

    Another interesting point Milynda :), what are your thoughts?

    Emma :)

    FibroAction Administrator

  • Hi Emma, I was diagnosed by a neuologist, but given no information at all. I then found out that my doctor only knew that fibro caused pain.he did not know about any other symptoms.and refused to take notice of me telling him that they were fibro related. Fortunatly he is a good doctor who wanted to help me, so he sent me to both a rhumatologist and another neurologist.Both confirmed that they could find no other courses for my symptoms except fibro. my doc now seems to at least read up on the basics, I have yet to find out if he has done more than that Now the interesting bit. The rhumy admited that he was not an expert on Fibro .where as the nueo seemed to be well up on it. that said both were keen to be helpful. and typing this has been hard wok I must have another look for my thinking brain :) sue

  • Hi Sniffer8

    I hope that you are as well as can be? I had a couple of previous medical conditions just like you and put my initial Fibro symptoms down to that. However, my GP sent me everywhere from hospital and to a chiropractor, I had massages, acupuncture to xrays and after the chiropractor wrote to my GP, she turned to me and explained that I had Fibro. She was really brilliant in her attitude but her Fibro knowledge was limited just like most GPs I have read about on the site.

    I would have to say that ninety-nine percent of everything I have learned about Fibro comes from this site! Therefore I think sites like this (especially this one) are essential as we can come together and work collectively for our common good.

    You take care and good luck with this

    Ken

  • after I was diagnosed in 2012 by my pain consultant I was referred to an occupational therapist who I see about every 6 weeks she is fantastic for help in the home items you get from her, referring me to other departments if needs be or if she cannot refer direct she asks by gp to do the referral she is so good and I wish everyone had a occupational therapist like mine.

    Belinda

  • Just want to say thanks for all the responses, very much appreciated. It's fascinating to read posts and questions and see the range and intensity of concerns we have with this condition.

  • No worries Sniffer8, it's an interesting debate and please check out our Christmas newsletter where the CEO Ella Vine talks about FibroAction's vision to bring about change

    ymlp.com/zZR6oL

  • Not 'alf. Isn't it good to know that somewhere out there someone does care. I don't think room 101 is big enough for me. I do care about you - and everyone else with this and other horrible news.

  • I have seen both types of consultant and the rhumy diagnosed me told the go a list of drugs that can help and referred me to the neurologist to rule out ms ect he asked for some tests to rule out epilepsy tests were negative so neuro didn't want to know as it wasn't epilepsy and go could manage it I am off to pain clinic at end of the month not sure what to expect however I have had a very bad period the last 2 weeks but I can't fault my gps they are brilliant I am going again tomorrow cramp has been real bad last 3 days but I find the consultants at my hospital a a waste of time I have a 2 hour journey to the pain clinic that's going to be a nightmare in itself however I am will to try anything even if it cripples me to get there take care anyway it looks like we all have a different support network be it gps or consultants 1 or the other seems to help xxxx

  • fmnetnews.com/fibro-basics/...

    This is an article I found on another site. This actually sounds like a big controversy. I have just been diagnosed and I find the whole medical system thing very frustrating but I would of course because I am a social worker.

    It is personal opinion that neurologists might be in a better position to diagnose. Treatment might be better from an occupational therapist.

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