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Fibromyalgia Action UK
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So angry and upset

Well been to see the rheumatologist today over my wide spread pain which has got worse over the 3 yrs my doctor said it cud be psoriatic arthritis or fibro, had bloods done which showed no signs of arthritis,I'm taking dhyrocodeine 60mg 2 a day tried all kinds of pain killers so he referred me to rheumatologist was in there literally 15 mins he never done examination which i thought he wud do and i said thought u examine he said ok an and checked my back and just checked my knuckles and said no sign of inflammation and basically said that I dont have arthritis and nothing he cud do except refer me to pain management. I was obviously peed of about .i explained that I was referred there before but couldn't attend because of work and zero contract and having a toddler,he said nothing else he cud do. i mentioned about my doc saying I might have fibro so he said i will diagnose u with that then if u want, i can't believe it.

Any suggestions for me because I really don't no wot to do,Was thinking of seeing a chiropractor.

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Hi I'm a bit similar .he should have done a bit more after been on waiting list.im convinced I'm r a ms or something.i gave up to much stress said painkillers and physiotherapy and chronic pain programmes way ahead.medication wise been on it all even (methratrexate ?)why?.i do really sympathise with you.you can get a rereaferral if you get worse and ask for diff rumatologist.i don't know if you should leave it the now for less stress or ask 2nd. opinion.but end of day they must get your pain. under control do not let that go. take care

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Thankyou i really dont no wot to do but im not letting it go.

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Speak to gp they will sort it out.sometimes they dont like referrals unless inflammation in blood and do not like diagnosis ra without inflamation present at time and other tests .but it does say you can have ra without being positive for them.

.leave it a few days till you calm down then have a meeting with gp

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Yes I new that with the blood results ,but yes I will do thankyou for reply tho I really needed to vent as I was so upset wen I came out.

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Hi Kagz just me but I think you should put your pain management before your zero contract and work, because that being the first priority or you will end up with to much pain, to have a zero contract or work anyway. sorry to be a bit blunt but will give you a hug xxxx

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Really my work is zero contract and don't get sick pay and make me and my children homeless ,pain management consist of pain meds which I'm on physiotherapy which have done nothing and the psychological affect which I no its affects.

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very sorry to hear that take care x

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With Xmas just about on us. I think you would be better off just putting everything on the back burner til the new year. You will be all fresh again and ready to take on the world.

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It is hard know how your feeling .hope gp is beteer

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I have found the pain clinic to be the most helpful of all the medical departments I have been to, try them and see, maybe they will give you a diagnosis. Sorry about the rheumatologist attitude, some of them could make you scream with frustration.

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Been to the pain clinic they fobbed me off too I had the nerve block injection in my back 6 months ago which didn't work, then after that he said nothing more can be done.

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Same as me pain clinic was useless, nerve unbloocking jabs, lidocaine infusions, Bowen technique,pain management course, all hopeless then he old me there was nothing more je could do. Basically told me he didnt believe I was in pain

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There needs to be a lot of education to manage pain

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I no it's frustrating, but if you've had tests and nothing else is showing and it is fibro, then he's right , there is nothing he can do (Although if he changed his attitude it might help!) With fibro it is mainly pain relief and self help , ie diet, exercise , physio etc , and even when you've got it sorted and feeling ok , you'll have a flare and back to square one 😕 , it sucks big time but we're all in the same boat. Hope you have a good spell soon x

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I've had a blood test for rheumatoid arthritis which was clear which doesn't allways show up,an Mri which didn't show anything thats it,his attitude stunk plus he didnt do anything at that appointment just shut me up by saying its fibro ,understand that if it is fibro then ye pain relief ,self help ,diet etc and getting a diagnoses is all i wanted so to deal with it.yes I no were in the same boat that's why we are on here.

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What other tests would you like? If your not happy then talk to your Dr, they need to listen to you. I was diagnosed in 2012 , I had blood tests , I had to keep a diary of symptoms for 6 months and then sent to rhematology. So I don't think there is a 'standard' way of diagnosing fibro yet. I've not even had an MRI.

My rheumatologist just spoke to me , asked me questions on day to day living , how I was feeling etc. When she examined me , all she did was press on my trigger points.

I hope you get it sorted either way.

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Thankyou.

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I spoke to my chiropractor ( I don't see her regularly but she put my neck right a couple of years ago) and asked her if she could diagnose fibro.

I was going to book a private drs appointment because I'd been told it was an 8 month wait to see NHS one and thought the chiro would be cheaper and nearer.

Chiro said she was qualified to do the 18 point test ( think it's 18) and could tell me what that showed but that the GP probably wouldn't accept her diagnosis. Although she was only young to charge £30 she told me I was best putting that towards the private Rhematologist.

The dr you saw had a poor attitude,smoke if them seem to have no people skills at all and his attitude almost sounded like " choose your illness, I'll say it's that" --- doesn't really instil confidence, does it ?

You're entitled to ask for a second opinion and I think I'd go for that. If there's any chance you could have psoriatic arthritis you really want to either identify that or rule it out.

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Keep fighting. Try to get a second opinion! You are entitled to it. It took me 3 years and four different consultants to get diagnosed and my current rhematologist has said that despite no inflammatory markers (not always shown in patients especially those who take a lot of pain medication especially anti-inflammatory meds.), there was some sign of thickening in some joints which shouldn't be there in someone my age. I know it's infuriating but you've got to fight as in all jobs, not all Drs are proactive...

Good luck

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Thankyou for that I will definitely carry on the fight.

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I would write to the hospital and say how unhappy you are about the service you received. Go back to your GP and request a 2nd opinion . I was referred to King's College Hospital in London for them to identify fibromyalgia. He was a professor and a specialist in this kind of field. Your GP needs to send you to someone who is well trained in this field. You are entitled to have this 2nd opinion. Good luck . Big hugs

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Thankyou yes I will do

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I am so sorry you had to go through this .It really does feel like we're second class in the health help sometimes . I have been to an Osteopath before and found it helpful , though lack of funds now prevent me from going again , unfortunately .

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I'm so sorry you are going through this, I was referred to rheumatology and the consultant I saw twice didn't examine me, he ordered an MRI (just showed some disc degeneration), gave me anti inflamms for my back pain & referred me to pain management. I went back to my GP and he rereferred me (thankfully Guys has a short waiting list) and queried fibromyalgia, this time I saw a fibro specialist who thoroughly examined me, spent 45mins with me & explained everything & diagnosed fibro. Ok there's not much that can be done, but I felt so much better having a diagnosis I trusted. Don't give up.

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Hi Katz, Fibro usually affects soft connective tissue /muscles etc but it's Not an inflammatory disease like PMR / GCA therefore imflamation does not show up in blood tests. like many diseases, the diognosed is arrived at from having a minimum of 11 tender points out of 14. There is Not one definitive test to prove or disprove it. The diognosis is instead arrived at from having a group of 'symptoms', (as do many physical & mental illnesses. ') the blood tests / ex-rays / scans are to rule out more serious diseases. In truth many Dr.s still don't recognise it & will say/ would have said in the past- you have 'wear & tear', 'age related' or 'not,enough exersize' or 'muscular skeleetal, ' or the old Yuppie-Flu! I'd had Muscual-Skeleetal, many yrs before being 'diagnosed' with Fibro, then 12'yrs ago the,imflamation soured in my blood, & my mobility became greatly reduced & the pain at times unmanageable. Dr.s are trying to wean me down on the steroids, & am just embarking on a Disease Modification treatment.

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Hi Kags if you are unhappy with your doctor's response there are things you can do. Get in touch with PALS, who will help you to decide what to do next. They will also tell you about your local NHS complaints advocacy service, which will support you to make your complaint or comment in a constructive way. You can report your experience to your local Healthwatch. Every area in England has a Healthwatch. You can find out your local Healthwatch through the Healthwatch England website.

I understand that your consultant appeared to be unhelpful and giving you a brush off. However, the positive news is that he doesn't think that you have arthritis.

You don't say what work you do but perhaps your problems are related to your work - do you have to stand a lot or use computers? It may be that your Health and Safety rep at your work place could give you some support.

But get in touch with PALS (Patient Advice and Liaison Service) for more help.

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Thankyou that's helpfull I'm a vocational support worker working with people with leaning disabilities in there work which means a lot of travelling on public transport and standing up a lot.

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Hi

I'm sorry youre having such a rough time. The most important thing as others have said is tobget the pain under control. I had a GO who wasn't listening to me. I changed and saw some one elsi in the practice who has been really supportive.

I also went to an osteopath and had some acupuncture which seems to help but it can be pricey and not always an option.

Keep fighting and ask to see someone else at the hospital. It helps sometimes with the brain fig to write it all down before you go and take some one with you to listen and take a note

The doc is right though if it's fibro just need to accept it and work out what's best for you for work and travel

Hugs

X

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I can accept that if it's fibro don't have a problem with that ,it's just the way the consultant said well if u want me to I'll diagnose it as fibro he just made me feel like it was all in my head.

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There are lots of us who know it's not all in our head. Some doctors need to kearn to listen to what we are saying.

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I'm so sorry you were treated like this. I had very similar experiences. I think that specialists vary in terms of which research and findings they are up to date with, and in terms of their own beliefs and biases.

I was so desperate I used my credit card to see a private rheumatologist. But of course, he was the same one who does NHS appointments. It was still only a 10minute appointment and no help whatsoever.

But then I had a new GP who arranged an ultrasound to check for fluid around the joints. There was fluid so then they treated me for it (inflammatory/rheumatoid arthritis). I have had such a big improvement since taking RA drugs, and regular ibuprofen (still need codeine though). For a few appointments with my rheumatologist I saw a registrar instead. She was brilliant and tried different drugs and explained things. She was going to suggest another RA drug if things got worse, but I ended up seeing the actual consultant. He spent 5 minutes with me and said it was just fibro pain and 'looking at me' it wasn't arthritis. Looking at me was literally looking at me on the chair. No looking at any joints or anything. I was really upset and distressed but he just dismissed me.

I swapped to another hospital. The new one is better but not good.

It's so frustrating. I really feel for you. It's just about finding the right rheumatologist, but I don't know how you do that. It's so exhausting, and appointments take months ...

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Aĺl the rheumatologist done was look at my knuckles and said no inflammation ,I came out nearly in tears he has referred me to pain management so seeing a pain consultant on the 13th Jan taking someone with me this time .pain is mostly in my neck shoulders,my wrists wen writing and opening things ,knees and lower back I'm sick of being in pain,I've had mri,blood work for RA ,root nerve blocker in back am on 60mg 2 a day dhyrocodeine an paracetamol ,so i no im not in pain for no reason the pain meds help but thats it,so im hoping seeing the pain consultant might actually listen to me.

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I hope the pain specialist does help. If it's an inflammatory arthritis they can put you on the right drugs. Ask for the ultrasound scan for synovitis. My hands weren't even puffy when I had the scan, but there was fluid still. The good rheumy said that is what needs treating. She 'believes' in seronegative RA where it seems others don't ("oh it's just fibro"). I've done lots of crying during and after rheumy appointments. It's exhausting ... 'unexplained' pain is just horrible. Good luck with it all xx

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Thank you for that it really helps,see how my appointment goes x

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