Absolutely furious!

[vegan]

Hi all,
I have just come back from the rheumatologist. My doctor referred me to one so he could diagnose me with fibromyalgia. My doctor thinks I have it. I have every single symptom apart from IBS. I was only in the room with him for 7 mins. I wrote all my symptoms down but he didn't really read them. He made me lay on the bed and told me to lift my knees up. Then he twisted my ankles around a bit. I asked him if he was going to do the tender point test and he was adamant that that is what he'd just done! Well I know it damn well isn't! I told him it felt like thistles were being dragged across my muscles and he said that was my brain releasing pain chemicals. When I asked him why my brain was doing that he just said "If I knew that we could cure everyone" Then he told me to go to the pain clinic and ushered me out of the room So that's that then...........I have to keep taking tramadol and gabapentin and amitriptyline and never know why I need them?
I'm in the UK and this is all free on the NHS. I wonder if it's worth paying to go private? I was so hoping for a diagnosis today. He could see from what my doctor had sent him that my blood tests are normal and my xrays and MRI are normal. I thought he would read my list of symptoms and do the tender point test and agree that it was fibromyalgia. When I press the tenderpoint myself they are sooooooo painful.
Anyway I cried all the way home because I hate feeling like I am insane.
Any advice from anyone?
C X

 

[Forgetmenot]

Ring your doctor up and tell them what happened then ask to see another doctor at the hospital ,u can .my doctor told me I had Fibromyalgia and said seeing a doctor at the hospital news a waste of time,he was right. Like you I was in there a few mins. He said yes you have mild Fibromyalgia but that was it.

I'm not mild now. Anyway if u trust your doctor stick with him/her.

But do tell them what happened .

 

[vegan]

Thanks forgetmenot
I'm actually at the doctors in a couple of hours anyway so I'm gonna tell her what an outrageous waste of everybody's time that was! So did u just get the diagnosis off the gp then? I don't think the UK is as good as America for discussing fibromyalgia. The doc's here seem to be in the dark ages x

 

[diamond]

You are not insane and this dismissive behaviour by a rheumatologist is disgraceful and all too common amongst the medical profession.

They don't understand our need to be heard, talked to. validated and given as many answers as possible.

We know that they don't really understand fibromyalgia or there would be better treatments and a cure on the horizon so i guess your rhuemy doesn't feel he needs to check all your tender points etc because nothing he can do or say is going to change the fact you have wide spread pain.

It is bad to say he did if he didn't check your tender points.

If you go private you will get a rheumys full attention for at least half an hour maybe an hour and a chance to talk properly, ask all your questions and should get a proper assessment.

I have been privately for various problems over the years and it is a better experience.

You can look up specialists at whatever private hospital you choose and see what their area of expertise is. So you have complete choice in who you see or you can ask your GP who they would recommend.

Then all you need is a referral from your gp that can be email across to the rheumys secretary.

The drugs you are on are typical for fibro.

Amitriptyline for neuropathic pain and sleep and to relax muscles...the gabapentin an anti epileptic for same kind of pain and tramadol a synthetic opiate for blocking pain receptors. Its quite a mix but if it helps...you dont say if it gets the pain manageable.

I hope so.

i have just seen Forgetmenots post..good idea if private is too costly.
Take Care x

 

[vegan]

Thanks willow. My doctor told me to save my money and she was just gonna treat me as if I have fibro and apologised about the rheumatologist. I've never heard of anyone having a good experience with one. There must be compassionate ones out there surely????
Yeah my tablets do take the edge off. The tramadol make it possible to get moving in a morning. The gabapentin helps with my daily headaches and the amitriptyline helps me sleep. They don't stop all the pain but I couldn't function at all without them. I am VERY sensitive to weather changes so some times of the year are better than others. I can't sit out in the sun at all tho. My head starts pounding within 10 mins. Obviously the cold weather makes me hobble around like I'm 95 not 43. I just so wanted the rheumatologist to believe me and then I could have a kind of closure if u know what I mean. How can he twist my ankle around and say I don't have fibro??? I even whinced and he ignored me. How can they be so quick to say u don't have fibro but it takes years to say u do? I'm still so furious x

 

[diamond]

I understand but the emotion of fury will only make your pain worse. It sounds like you have a great GP who knows about the right drugs for fibro and that is a blessing as many don't even believe in it let alone try the right drugs.

She may be better to help you along this journey than a rheumatologist anyway.

The thing with fibro is that even a diagnosis by a specialist or all the medications in the world, it is your management of your own health, pacing, resting, a bit of walking when you can, finding enjoyment in small things and taking care of yourself emotionally and physically that will be the best medicine for you.

Our doctors can really only prescibe medicines but its not thier life and they are limited as to what they can do.

At the end of the day fibro has a mind of its own and we have to find a way to cope and help ourselves.

You will adapt...give up some things like being in the sun if that's a major trigger for you...its horrible, it makes us angry and sad and feel why me.

Better to be in less pain and wait until the sun goes down to go for a stroll or car ride.

Its a horrid illness it takes a couple years to get your head round and then when you think you are coping mentally a bad flare or new symptoms spiral us again.

Give your self a pat on the back for being brave just to cope so far.

There must be good rheumys out there but it wont change anything unless for you it is vital in your mind that you get the closure you talk of.

Take CAre

 

[vegan]

Yeah thanks willow. I know the diagnosis wont make any difference to me but it is so upsetting to be not believed. All my fury is based on him just totally dismissing me. He just smirked and rolled his eyes when I said the word fibromyalgia. When I asked him if he didn't believe it existed he just scowled and chuntered under his breath! Anyway i'll just have to get over it and move on. I've had a Tempur mattress delivered this morning and I am so excited about that My pain is beyond belief in a morning. I can only sleep on my back now cos even laying on my side makes my hips feel like knives digging in. Even on my back the pressure of the mattress is so painful. I am so hoping this amazing memory foam will help that. It was just over £2000 in the sale but it will be worth every penny if it helps.
Thanks again willow. Hope u're having a reasonable day x

 

[diamond]

Let us know about the mattress Vegan. I have a good pocket sprung but it is about 7 years old with a bit of a dip. Like you whatever i lay on hurts like anything so i sleep on my back too...but then my lower and upper backand shoulder blades hurt.

I have tried out memory foam in the past and found it a bit weird sinking in and hard to move/turn over but that was years ago before my fibro got this bad.

Do let us know how you get on and if it helps....all info is much appreciated.

Just to say i do get how totally infuriating such rude dismissive behaviour is from any doctor. I have had it even from my GP and other doctors.

I remember 20 years ago suffering from severe fatigue ( i was still working then and had no pain ) but my gp referred me to some guy at the hospital who told me 'oh I get really tired after a days work and basically go away or you must be depressed.

My GP used to say thing like somatized pain or maybe its your posture ..and raise her eye brows when i described how much terrible pain all over was affecting me...like oh it can't be that bad.

It makes you feel so invalidated when you know its real.

Hope you get some better sleep on your new mattress. x

 

[Nexi]

Memory foam mattresses have saved me!!! It is not the cure all but it does help over the typical mattresses. There are different qualities of memory foam and I am going to eventually try to put a memory foam topper on our memory foam mattress.

It personally works for me. I am not sure if you guys also experience the burning skin feeling with your fibro. Well, lucky me, I do. So, having everything super duper soft is critical to aid in sleeping. Memory foam is way better than conventional mattresses. I also have to get the ridiculously expensive sheet sets that cost as much as a small car!!!! Anyways, let me know how you like your foam mattress.

As for the stupid, dim witted , egotistical, self righteous, prick of a so called doctor...what goes around comes around. One day they will understand your pain. Not that I wish what we have on anybody...okay,who am I kidding...those type of doctors and so called "professionals " I don't mind if they do.

 

[diamond]

Ha Ha Nexi well said i think there are a few people... doctors included who i wouldn't mind if they had this pain for a month or two...maybe a bit longer and just let them really see what the heck its like !!!

OHHHH baddy me !!

 

[vegan]

Well I've had 3 nites on the amazing memory foam and I have to say it is the best thing I have ever bought! It's definitely helping with the morning pain. The crushing pain in my back and hips has eased. Still can't sleep on my side cos of my neck and shoulder but I have slept like a log I would really recommend it!!!!!
Ha Nexi yes if only these imbecile doctors could endure a day like we do! It's like me walking into his room. He tells me he has a headache so I twist his head around a bit. When he whinces I roll my eyes and smirk then tell him he doesn't have a headache!
It looks like I'm never gonna get a proper diagnosis but at least I'm on the correct medication and learning to live with it. x

 

[diamond]

Glad the mattress is good. Is it harder to turn over and move around as i know you kind of sink in?

You made me smile about the doctor .....maybe he will get his come-upence one day!

 

[Nexi]

So very happy to hear that the memory foam is working out for you! Sweet dreams Vegan!

 

[vegan]

I'm not having any trouble moving about on the mattress willow. I got quite a firm one so it doesn't seem to bad for sinking in it just really supports me without the pressure pain. I was meaning to say, also for the past 2 or 3 months I've been having really painful glands on my neck and sometimes under my ears. Is that related to fibro at all or is it something else do u know? They really do hurt to touch. x

 

[Misschloe]

Hi you have had a bad experience, don't let this stop you from getting the best treatment possible , work with your gp, use the pain clinic they are usually located at your local hospital, your doctor can refer you just ask , they have alsorts of options available and advice, you can use them to find a pain relief that helps work for you , fibro does not discriminate, it's relentless, after living with it for years it's trial and error , everyone's different, think I went through every medication known to the pharmacy before I found a happy medium, a gp told me 12yrs ago they only say you have fibro when they can't find anything else wrong with you, thank god for a new gp 5yrs ago who said she thought I had fibro, sent for tests ,yes I had, only saw rheumatologist once, handed back to care gp pain clinic, pain specialist told me don't let any one tell you it is all in your head, because it's not, this is medical condition, like any other, so vegan it really is hard to deal with, and it will take time, don't be afraid to try new things, there's no quick fix , but you will in time learn to live with it, look forward. Good luck