Just had a second opinion from a new ... - Fibromyalgia Acti...

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Just had a second opinion from a new rheumatologist which had not worked well.

Carolinee71 profile image
10 Replies

I went along to the appointment and I had sorted out all my paper work, results from tests and I had put on the iPad photos of my swollen joints, and ever changing colour from bright red and painful to blue moltely legs. I also took my Pain and how I am feeling dairy .

He looked at the photos and say there were interesting but might not mean anything but he will do some blood tests to rule out anything, but it more likely to be all the tablets I take!!!

He also said that if I take 40 MST twice a day plus Oramorph I should not feel any pain from anywhere. I said if I take those tablets it reduces the pain to copyable level without them I can't move and I am in tears all the time du to the pain.

He briefly examined me and said I had no pain in my hip joint so it must be a muscle pain and my back was very weak.

He didn't seem to be interested in my pain levels or how it effects my life.

He said he thought it was in my head, in that when it started it was " real" but now it's all I. My head and it's a metal thing as to why the pain is getting worse .

I got the feeling he thinks I should not be on such strong pain killers, I told him again that I had worked up through different levels of tablets.

By this time I was in tears and then to him the pain , was all to do with my depression.

I Didn't show him dairy as by this time he had made his mind up .

He is going to do a scan and see me in 3 months.q

I was now in floods of tears and the depression is back right in the front of my mind. He told me I was in a circle of depression and pain, I kept saying the pain was there first, but no all his answers involve the depression and how I am on too many pain killers

I asked him about weather or not I have got fibromyalgia , he wouldn't confirm that but ,he also said about "complex pain syndrome " he seemed not to like these diagnoses at all.

He kept going on abut how it is the depression that is coursing everything ( I let it slip that I have had depression on and off for years) after that it is all to do with my depression

I now feel like I am back to square one, I know these doctors are clever but I can't not accept that all my pain is in my mind as I was happy and content when all this started, the depression came along later.

Please can someone tell me it

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Carolinee71
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10 Replies
she33 profile image
she33

It took me 2 yrs to get an answer from my dr, I saw a rheumy twice and twice he said all i needed was physio. I too was told that my pain was due to depression and was put on prozac for 6 mths which didnt agree with me but i felt i had to do the 6 mths to prove that it was not the case. I now take so many painkillers i dont know what my name is some days, I hate hearing that people are still being told its all in there heads as it does knock you down and its the last thing you need, I would ask to see a different doctor and please dont give up keep fighting i know its hard but we need to keep going to be believed x gentle hugs x

Carolinee71 profile image
Carolinee71 in reply to she33

I know how you feel. I am now as low as I have ever been, worse still took a friend with me who on the way home stop the car to shout at me as he now agrees with DR and all I have to do is not be depressed and I will be fine. I know this is not the answer, why won't there listen to me, I had the pain in my hip before I was depressed, I got more unwell and more of me. Hurt while I was taking paracetamol

Thank u for answering, it is such a horrible condition to have and top have to keep proving myself. The dr today told me I had a weak / unstable back and if I moved around more it would get better, shame I have had the MRI that shown my spine is crumbling at the lower back. There put discs number that I don't understand but I guess thinking positive will heal it.

I am sorry that you remain in pain and have to take so many tablets to keep the pain away.

What do u take ? As I said I take MST40 mg twice a day plus Oramorph

I don't even remember my name, or as in leave things in the oven but only rememberer an hour or so latter, and I am alway getting lost

Hope you have a good evening

Lots of love and soft hugs

Caroline

anbuma profile image
anbuma

my rheumy told me I had gained 11 kgs in 7 years and told me I needed to lose weight but didnt listen when I told him I had just lost weight everywhere else and that any weight gain was all abdominal and until someone sorts my stomach out I wont lose weight because I don't eat cakes biscuits snacks puddings and very little fried food.response was to see a dietician.told him not going to cos you aren't listening to me

jillylin profile image
jillylin

Hugs to you all. I was sent to see a Neurologist who, once he heard I was on Anti depressants , became very rude and dismissive then decided I was just suffering from anxiety. This was on a Monday. That Friday the Pain Management specialist said. "it's Fibro and depression is often present with it.

It really pulls you down when you meet people like that. Care and compassion don't exist. I hope you get to see someone with more compassion and sense.

Hugs

Jillyxx

Hi Caroline you must be feeling very low right now and I'm sorry that your rheumy appointment did not go too well. I must ask if you are having any counselling for the depression or are you just taking medication?

My rheumy seemed fine with all of that but then I have been having therapy for depression and anxiety on and off for years also. This does mean a lot to many doctors and hospital consultants if they can see you are receiving what they call 'an all round treatment'. Sad I know that even when you are really suffering you have to jump through hoops!

Its only a suggestion Caroline but if you were to arrange some other treatment for the depression alongside the meds and everything else you may well be taken a little more seriously. I know from years of personal experience on this subject as for 15 years and multiple x-rays, test, scans pain meds etc to be told its in your head.

When they say 'its in your head' what they really mean is that if you can control the depression somehow it will be easier for them to gauge whether depression is exacerbating your other health problems or not, which, yes, sadly like you I fought and fought stating the pain was there first and the depression came later :) If only consultants could explain things correctly then we wouldn't be left thinking there's no hope, but there is hope and I hope that you don't give up, persevere hunny :)

Another Q I'd like to ask you is if whether or not you have been through a pain management programme because that could be very useful to you I found it very helpful.

I've babbled enough about my experiences Caroline, sorry about that but hope the babble is useful :)

Here's some calming, relaxing lavender and ylang ylang fluffy cuddles hope you don't have sensitivities

xxxzebxxx

Ginsing profile image
Ginsing

Morning Caroline,

I hope you managed to rest last night after such an exhausting night/day seeing the man.

He sounded as if he had decided before your appointment had finished and you were obviously devastated by his manner and his responses. If you felt he wasn't helpful and didnot listen you could ask for a referral and see someone else.

Sometimes it is difficult there is still a swath of professional consultants who do not believe in our syndrome which does not mean it is unreal it usually means they (continues down below)

Ginsing profile image
Ginsing in reply to Ginsing

had focused on other diseases.

So dont be put off many of us are treated for depression I mean who wouldnt be depressed after the months of pain and life changin events that occur in ou lives

I try to remain positive and keep a sunny outlook it helps me find my way through this morass.

I hope you have a better day today

gentle hug

xgins my putter being silly :)

Does this rheumatologist have a degree in psychology, and mental health training, or is a psychiatrist? If not, tell him to stop making a mental health diagnosis. He is not qualified. As for calling you a liar, I would not stand for that. Perhaps he could join 'we do not give Atos' team because he would fit in nicely with their ethos of not giving a crap or being qualified in any way.

Fibromyalgia is not caused by depression. It is a real condition or syndrome. Fibro sufferers often suffer from depression, but depression is a separate condition in itself. I mention syndrome because so many other conditions go with fibro. Do not tolerate crap and rude treatment. Just tell him you will not tolerate his behaviour and that you are going to find someone immensely more suitable. Also state that you will make a complaint to the hospital and British Medical Association.

Sorry to hear you have had such a hard time. It does not help, does it? I always step over such people in my rush to find someone decent and worthy to be my doctor or specialist. :))

sezzle06 profile image
sezzle06

I have just been diagnosed by rheumatology dept after yrs of battling with gp who kept saying I was tired and stressed....I've been diagnosed with post natal on both pregnancies and also been referred to mental health which agreed with me...I wasnt depressed!! After numerous blood tests over the years and being referred to neurology for my headaches I finally have a answer. Before even checking my pressure points she said she knew from my symptoms. Its unfair how you get mis diagnosed for all them years bvz ppl dont understand or want to believe you.

Carolinee71 profile image
Carolinee71

Thank you all for answering. It did seem to me that this new doctor as he knew I have a long history of modatrate to severe depression over the years the pain I am now in must be to do with depression. I know I have had to have help from the mental health team, but each and ever time I am told I have reactive depression. Being abused by a family member when I was young gave me depression, having a daughter who was very sick for a number of years gave me depression and now being in pain that is slowly destroying my life has yet again made me depressed. I have asked my GP weather or not all these pains are just a way of the depression coming out and he told me he would be depressed if all of this had happened to him. He also said I have been more severely depression in the past but I got over it with the help of pills, counselling, friends and family .

I used to have a really great full life. I worked in a bookies which I loved every minute of and did all the overtime that was on offer I could not believe I had found a job that felt like going out with friends not work. I would do over 50 hours a week and loved it.

Then out of the blue I got a pain in my left hip which over about a week got so bad it made me cry. Things from then one got worse and worse, giving up my job was heartbreaking and knowing that if or when I get better I still have the job to go back to means I so want to get better.

I hate being like this which I know doesn't help the depression so I am having to learn to live with it and not fight it all the time.

I just wanted to see a doctor who has a greater knowledge of Fibromyalgia so I could ask some questions, find out if lifestyle choices could help and although I have to take a lot of pain killers I want to chat to see if I could help myself. I do yoga at home but apart from this I just wanted some advice.

Sorry to have gone on so much it just has made my blood boil being treated this way, I guess this doctor will blame the depression on my heart impairment too.

I really hope that everyone out there in happy fibro land has had a good day, enjoyed the bit of sunshine we had and had low pain levels all day

Night night, off to take my tablets and try to sleep

Gentle hugs to everyone

Caroline xxx

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