what a waste of time that was

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what a waste of time that was

Postby Batty » Tue Jun 28, 2011 5:29 pm

just been to see a doctor about getting a fm diagnosis, showing her the nhs printout, explaining it was like reading about myself.

After a couple of half-hearted attempts at pressing on the tender points, I was told yeah I probably do have it but there's not a lot they can do about it other than give me painkillers.

Asked about a referral to a rhumatologist and was told they wouldn't be happy about it.

She was also about to cut the dosage of the co-codamol to 15/500's until I told her the 30's only took the edge off the pain.

What next? Do I wait until my own doc comes back in august?
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Re: what a waste of time that was

Postby FluppyPuffy » Tue Jun 28, 2011 6:18 pm

There is more that can be done, other than just giving you painkillers. This linky goes to meds typically used to try and get some relief from FM. It can take a while to get the right mix for you, but it is possible to find a combo that makes a difference to you http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Treatment.aspx

It's very frustrating when docs are so dismissive of conditions like FM, esp as there are pages about it on the NHS site with info about it :swear1: :swear1: :swear1:

Is there another gp you could try and see at your surgery who might be more helpful and understanding as August is quite a way off to wait to see your regular gp :yikes: :yikes:
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Re: what a waste of time that was

Postby shazq » Tue Jun 28, 2011 9:12 pm

Hi
Like flup said there are lots the doc can do for you. Meds, physio, pain clinics. Dont give up, keep going back and ask your gp to give you something, you dont have to live with pain. :hugs: Do you have another gp who might be more helpful?
Having a good gp makes a big difference.

Have a look at the treatments thread and you will see all the different meds that are used for fibro. :goodluck1: with your gp
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Re: what a waste of time that was

Postby denys » Wed Jun 29, 2011 11:51 am

Yep agree with Flup and Shazq, see another doc :fingerscrossed: :fingerscrossed: :fingerscrossed: :hugs: :hugs:
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Re: what a waste of time that was

Postby roxichik » Thu Jun 30, 2011 10:09 pm

Hi,
I too saw another Doc today. I changed Docs as my last one just gave up coming to see me. (Took him 38 days to come and see me when I had a lump in my breast).
The new one said FM does not exist, it is all in my head, I am just depressed and if I won the lottery tomorrow I would not feel any pain any more. He also said if I had a baby and a husband I would not be bothering him.
He did not touch me. He did not examine me. He has not seen me before or seen any of my notes - he just made a snap decision that a 41yr old, housebound female must be just depressed. He did not ask if I could have children - I can't. He did not ask if I even like men - I don't. He did not ask if I want to win the lottery - I don't.
It seems we are still banging our head against the wall.
I have Sjogrens syndrome and an overgrowth of bone in my hips so have been housebound for 2 years. He said Sjogrens is just dry eyes and a sore throat and my hip problem is nothing.
Due to this new Doc's report I could lose all my benefits and be forced to look for work when I find getting out of bed a daily challenge due to the pain i'm in.
I was not depressed before he came but I sure am now.........suicidal!!!!!!!!
What do you do when those who are mean't to help you deny you even need help??
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Re: what a waste of time that was

Postby ciderpig122 » Fri Jul 01, 2011 11:49 am

Oh Guys :( you sound as low as me :(

I decided to write to my GP, as I forget all the issues I have and I was getting nowhere

Since I did i think he has realised I am on the edge of giving up.

cause we forget everything make notes as you go along for 1 day- IE send yourself a text when you think of it, write it on your hand, put it on a scrap of paper and in your shoe so you cant forget it

take an hour out and type it all down, I tried to be as polite as possible - I will add my letter below incase its any help to you


Dear Dr xxxxx

Its me.............again :(

I am sorry to be a pain, I am struggling to get my words correct when I visit you so I thought I would write instead, I hope this is OK?

The website you gave me is invaluble yet it is throwing up lots of questions. (THIS WEBSITE)

I tried to call Dr xxxxx who diagnosed me in May with Joint Hypermobility Syndrome and Fibromyalgia, he did advise me to call if I needed anything but the receptionist wont pass on a message unless you refer me again, however I am not sure this is beneficial at all as he did say all I can have is paracetamol and maybe 10mg Amiltriptiline if its cleared by xxxxxx Sleep Centre so maybe its not the best course of action for me.

I have been off work for the last week with depression and Pain, I am crying roughly 5 times a day and struggling to get out of bed every day I am so down.
Work refuse to accept that a reduction in my hours to 34 per week would be beneficial and I have asked to do this over 4 days max with no more than 3 consecutive days, they are 'looking into this'. xxxx sleep centre said they will try to write a letter advising this would be beneficial as most weeks I am working 5 consecutive days with 1 day off then 4 consecutive days, its just everything takes such a long time, and meanwhile I am sinking further down every day.

I know I wont get better, but people on these websites seem to get lots of support like Pain clinics, physiotherapy, hydrotherapy etc. I have been proactive and called Occupational Therapy for help and researched alternatives like Magnesium, Vitamin D, DLPH and 5HT.
My condition is that bad that I now cannot go shopping alone, I cant walk more than 10 meters without severe pain, my knee keeps giving way, I cant go for family days out, I am struggling to get out of bed and when I am sat on the chair at work for 9 and a half hours a day I can barely stand by the middle of the day.

Again, sufferers on the forum seem to always ask- Would a walking stick help me? Its a good point when I cannot get out of the chair and am shuffling due to pain but I dont want to just walk in a shop and get something as 1- I feel silly and 2 will it help?

Another question it has raised is the possibility of EDS3 as there seems to be a fine line and confusion to if Joint Hypermobility Syndrome are the same things? I have been researching and there seem to be similarities. I have always bruised easilly and al it takes is a small poke to my arm and we have a purple bruise, blood tests are a comedy event as all my veins dont show and when they do manage to take the blood I have a 2 week purple and green orange sized bruise that makes me look like an addict I also have an array of scars from simple bumps and burns to plastic surgery scars from a dog bite with clear stitch marks in it. I am not saying it is but its a question I would like to ask and seem unable to.

On the forums I have seen a Rheumatologists name mentioned alot- Prof. Rodney Grahame
http://www.uclh.org/OurServices/Consult ... ahame.aspx


Some members all over the UK get to see him on the NHS depending on their PCT, I have called and spoken to them and they advised me to ask you for a referal and write to my local MP if the PCT decline it, another option is to pay privatley, however this is £300 per hour, which is slighlty out of my reach currently however I will consider selling the car or computer if it means I can get some relief.

Sorry this is SO longwinded, I really do just want a few decent days and some hope, I completley appreciate its not a normal illness that turns up every day and I must be an absolute nuisance by now, I just dont know what else to do, I am back at work tommorow on completley unmanageable shifts and I dont know how long I can do it for.

If Its a straight no for the NHS london Appointment, please could you do a private referral letter I will try to raise the money ASAP.

My number is 0000000000 nd my email is 0000000000000 sorry for being a nuisance and Hope you can help.

Thank you

Caroline


Since I sent this letter I have got a referal to Prof Grahame, he is on our Local PCT but i was willing to sell the laptop to get to see him, he is Hypermobility & elher Danhosspecialist but also specialises in Fibro too, its the 13th of September but its a matter of weeks instead of the last 7 years with no hope.

Work refused a Fit to Work note off my GP and I have failed my probation period due to being sent home by their health and saftey rep and only having 5 shifts off in 6 months with this, they have said they will extend my probation but i have to lose 15p per hour for 3 months and never be off once in this period, so the GP has signed me off. They have agreed to reduce my hours but only after a 5 day, 9 hrs a day final stint as some kind of sick punishment so the GP signed me off til the 5 days if over and ACAS are taking my employer to a tribunal.

I reported my increased pain in the 1st week in March and they refered me to their Occ health on 19th may (7 weeks later) that recommended as a matter of urgency they reduce my shifts, and here we are on the 1st of July and its not been done and I am financially worse off!

I went to see the manager of the whole building on Wednesday and her is investigating HR as I pointed out, how can you punish me and give me file notes for being off, when you, inline with your own sick policy have done absolutley nothing to help me stay in work :)

I am not giving up, I cry every day, but NOBODY is beating me, Mum says i should leave it, but I lost a job due to bullying when I was undiagnosed so I am no way on earth letting it happen again

My blue badge has been approved, I have a rheumy appointment with a specialist, I am going to beat work and make them see I am ill and you cant bully sick people, Stay strong ladies....easier said than done when you sit with your hands in your head and a bottle of wine thinking of ways out,

I want to live, I want to be treated fairly, I was pregnant at 15, and I am 30 now, since i was 15 i have only ever signed on the dole for 7 whole days last year when a temporary contract ended I have never been without a job for more that 2 days, I have never had any help from this government EVER, I have always paid my own rent, even when my ex was beating 7 bells out of me the gorvernment couldnt help me, I pay for ALL my prescriptions and currently work 39 hours a week reducing to 30 hours and IT IS NOT GOING TO STOP ME FIGHTING!!!! :twodrinking2:

Keep strong, I am looking for a local support group but I cannot find one anywhere, I want to spend time with wobbly forgetful depressed people like me :) i want to be there to help scrape people off the floor when they are low and I want someone to help me up too :)
Fibromyalgia, Elher Danlos Type Hypermobile, OCD, Asthma, PTSD.
Im not ill, I am just special :D
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Re: what a waste of time that was

Postby denys » Fri Jul 01, 2011 4:02 pm

Caroline, you are an inspiration, what a strong person you are I applaud your fighting and hope you get everything you deserve. :welldone: :welldone: :welldone: you :flowers: :flowers: :flowers: :flowers: :flowers: :flowers: :flowers: :flowers: :flowers: keep fightiing girl and smiling :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :wine: :wine: :wine: :wine: :wine: :wine: :wine:
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Re: what a waste of time that was

Postby ciderpig122 » Fri Jul 01, 2011 6:13 pm

WHy thank you :D

(that was me on a good moment) LOL

I just REFUSE to be bullied! we are ill not dead! :D

Now, pass me that wine! :twodrinking2: :wine:
Fibromyalgia, Elher Danlos Type Hypermobile, OCD, Asthma, PTSD.
Im not ill, I am just special :D
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Re: what a waste of time that was

Postby ciderpig122 » Fri Jul 01, 2011 6:14 pm

OH!!!!!!! AND!!!!!!!!!!!!! ACAS are calling the Nazi HR worker today and telling her she has been bullying me and would my employer like to see them in court or resolve it now :D
Fibromyalgia, Elher Danlos Type Hypermobile, OCD, Asthma, PTSD.
Im not ill, I am just special :D
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Re: what a waste of time that was

Postby denys » Fri Jul 01, 2011 6:31 pm

Result :!: :!: :!: :!: :!: :!: :!: :!: :!: :!: :!: :!: :!: :!: :clap: :clap: :clap: :clap: :clap: :clap: :clap: :clap: :wine: :wine: :wine: :wine: :wine: :wine: :wine: :wine: :wine:
Denys

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Re: what a waste of time that was

Postby tonydin » Fri Jul 01, 2011 7:51 pm

:clap: :clap: :clap: :clap: :clap: :clap: :clap: :clap: :clap: :clap: :clap: :wine: :wine:
oone tough lady
wont get you any were im afriad but dam good effort
take care
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Re: what a waste of time that was

Postby denys » Fri Jul 01, 2011 8:44 pm

Tony, at least Caroline is doing something, the only sure thing in this life is that doing nothing gets you nowhere. The effort that Caroline has put in may just be the very thing to make her GP sit up and take notice, and dismissing her efforts is not exactly helpful or supportive
Denys

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Re: what a waste of time that was

Postby ciderpig122 » Fri Jul 01, 2011 9:17 pm

Thank you Denys :)

At least I wont be wondering 'what if' of 'should I have'

Would rather die trying than in a puddle of my own piddle :)
Fibromyalgia, Elher Danlos Type Hypermobile, OCD, Asthma, PTSD.
Im not ill, I am just special :D
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Re: what a waste of time that was

Postby tonydin » Sat Jul 02, 2011 9:20 am

oh sorry that came out wrong :oops: :oops: :oops: i thought her efforts were brilliant and tough ady was a compliment . i was haveing a poke at the medical proffesion , and it looked like it was directed at her , sorry caroline you keep up the preasure i agreee there must be something they can do for us all
denys thanks for pointing out how that post apperred to read
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Re: what a waste of time that was

Postby denys » Sat Jul 02, 2011 1:48 pm

No problem Tony, didnt think it was like you to be dismissive so glad it was just a miscommunication :hugs: :hugs:
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