Lack of support

malcamy

Hi Everyone,

I have been diagnosed with Arthritis (what sort i dont know) only 2 days ago. I know you probably are thinking well give them a chance... but let me bring you up to speed with the story so far.

I am 36 years old. I played Rugby for Blackheath from the start of the professional era in the Premiership till May 2008, i retired due to Knee injuries taking there toll and the fact that there are younger more sprightly players coming through the ranks.

I was diagnosed with Spondyloisis Dysplasia 13 years ago and was told that in my advanced years i will be prone to Arthritis due to it. However i could and should still play rugby as it is keeping me active. So i did...

Last year (August) i injured my knee once more and my consultant told me i had torn my cartledge again but both knees have a severe amont of arthritis in them.

In February this year I started to get bad lower back pain that has got to an unbearable level. I am now having Acupuncture every 2 weeks since June. I take 8 tramadol tablets a day and 8 gabbapentine tablets a day to try cure the numbness and pins & needles in both my legs. I have been off sick from work since the start of August as I cant drive on the tablets. I also cant walk for more than 5 mins. Not good when your job is 8 hours a day walking door to door in areas up to a hour from home. I am only on statutory sick pay so after tax my pay this month is £137.

On Wednesday when I was diagnosed the consultant ( who spoke to me like I was a 2 year old ) gave me no info at all.. Just said he was going to send me to the pain clinic. ( 4 month wait). He had also lost my x-ray results, lied on my medical report saying I refused a MRI scan because I am scared of enclosed spaces ( not true I did not fit in it. I was a rugby prop and have a 56 inch chest ), and refused to let me see the CT scan.

I don’t know what I have, what I can do, if I will ever get back to work, who to talk to, or what help/support is out there.

Sorry this is so long but I am at my wits end.

Emailed the arthritis care helpline on Wednesday afternoon but even though it says that they will reply within 1 working day, still nothing

Please someone help

barbara12

Hi Malc
There is the helpline number, they are really good at talking things through, you really do need to get this of your chest, and you have started by talking to us.
Can you ask your GP for an emergency appointment at the pain clinic, I did, I only got it a couple of weeks earlier, but it did make a difference.
You need to sought your meds, then your working matters, otherwise you will get overwhelmed with it all.
I was on tramadol, but I had to come of it, but the gabapentin has give me some relief.
Do you get some sleep at night, if not ask your gp for something.
We are all here when you need to talk, I am sure more people with other ideas will be along soon.
Love
Barbara x

malcamy

Thank you Barbara

My GP when i said i could not sleep, sent me for sleep apneoa tests and for diabetis. needless to say it was negative to both.

barbara12

Hi Malc
You go back to your gp, lots of people on here have had a hard time with there GP, I ended up changing mine.
Dont forget that they get well payed for looking after you, so go back and tell him you need something to help you sleep, you will feel more human after a good nights sleep.
The pain clinic gave me amitriptyline, it is for depression, but they found that smaller doses help the pain and send you off to sleep.
I do hope you get some help very soon
Please ring the helpline, I was desperate when I first came on here, and they really helped.
Let us know how you get on
Barbara x

salamander

hi Malc, there's a lot you can do. You can ask your GP for a referral to another consultant if you feel he isn't the best one for you. Ask your gp outright for some sleeping tablets. Amitryptilline can be useful as Barbara says. You can change your GP if they think s/he is not being supportive enough. Ask your gp to explain properly what the consultant's report says. Mine copies me into all correspondence which is great but they don't all do that.

You can apply for Disability Living Allowance which is a universal benefit for people with disabilities. It's not a quick fix but there is no reason why you can't apply. I don't know what the criteria is but if you go on to DirectGov website you can look it up. You might be eligible for other support as well - contact your local CAB for advice to tell you what you can claim. Am sure others here will tell you what else they know. They are a knowledgeable lot on here!

dorcas

Hi malc

so sorry to read of your worries about your health and the way you have been dealt with by the consultant. :?

you said you are being treated for arthritis... but don't know which type it is. Although your consultant didn't discuss the results of your tests and CT Scan :roll: your own doctor will have a copy of the scan results and hopefully a diagnosis.. that is if they have been able to settle on a diagnosis ...as some types of arthritis take longer to diagnose than others.

Sort out what the priorities are for you just now.... go see your doctor, contact CAB about benefit entitlements and get support!... speak to family, friend or talk to us. we will help all we can.. but within the limits of our knowledge.

Our helpline people are great and it's unfortunate and unusual not to have had a response from them to your e-mail. Please don't take this as anything other than that they have been busy.
I would suggest phoning them on Monday (number above) morning and talking through all that has been happening . They will help you get a perspective on things and offer advice and support with what to do next.

I do hope that you can get answers to your questions.... having such pain needs addressing and perhaps the meds need reviewing to ensure you have adequate pain relief and help with sleeping.

the issues about your consultant's attitude can be dealt with by making a complaint and asking to be referred elsewhere.

Iris x

elainebadknee

HI Malc

Sorry to read your story on here.......
I dont know if can help you lots except to say if you feel youre not being treated right, ask for someone else to do so...If the medication is consuming all aspect of life question your GP if that can be adjusted. Im sort of guessing as youre an ex pro you may know medical people who can maybe give you more advice, if not ask some of your old team mates can they suggest anyone, anywhere? If you dont ask or speak up you wont know....
I say this as Ive had a rough ride, I need some sort of knee replacement, half or full but have been denied due to being 42....My first surgeon offered to take my kneecap out and I knew it wasnt right, he was so arrogant and unprofessional....So i had to do all the work myself and get referred to Wrightington in Wigan (I live in Lake District) and i got a 110% better consultation......Im being spoken to like a person, not an annoyance and I feel tonnes better...
If your on here, your in good hands, keep in touch, these people will help you.......And re the helpline....Try them again, perhaps they were busy why dont you say you will contact them at least twice and give them a chance? Just writing on here helps you too, I know, Ive had a low spell and tis not nice but I promise you this will lift.....

Kepp in touch with us.....

Elainex

speedalong

HI Malcamy and welcome,

you have been offered lots of good advice on here. Definitely make a plan of action from these pointers. You have a lot to tackle especially when in pain and feeling so doped up. I would get to the GP first and see if he can sort out some different meds and keep the tramadol for nights/the worst days when all you want to do is stay home anyway. Get him to chase up/rebook x rays, find out what your diagnosis is and sort out the MRI - you can't be the only person who they have had difficulty fitting in a scanner! Tell him about negative experience with consultant. Once your meds are sorted you will be able to drive which will be a bonus. Get down CAB and get an appointment booked re sorting out your finances ...

Let us know how you get on.

SPeedy

hileena111

Hi Malc
You are having a rough time.
Your GP should have all the notes from the hospital...in fact if you request it most hospitals will send you a copy letter every time they send the GP one...at least you will have a better idea whats happening.
As for not sleeping....before you ask for something to make you sleep work out why you arent sleeping {if you can} is it depression, is it pain? Most docs wont give you sleeping tablets these days but they will treat the underlying cause of you not sleeping.
True...you have got a lot of good info on here so sift through it and decide what to do.....do keep in touch and let us know what happens
Love
Hileena

c4thyg

I'm so sorry that you're having a difficult time. I second what has already been said. Keep seeing your GP and if you can't get an appointment phone NHS direct first. Once you've spoken to them the GPs receptionist won't argue about giving you an appointment!! A trick that I learnt.

With regard to money matters, I certainly recommend you applying for DLA and seeing CAB for advice. They can help you to fill out the forms and get the wording right. I never thought that I would get it at age 32 but I did. The worst they can do is say no. It's also worth knowing that if you do get it, it will be backdated to the time of application. If you phone and get them to send the forms in the post they record the date of the phone call to backdate it to. CAB will also be able to advise you if there are any other benefits that could help you.

As hard as it is, try to keep your chin up and keep posting. There are a fantastic group of people on here who have got me through an awful lot in the last year or so. We understand and don't mind if you need a place to vent as well as for advice.

Take care. xx

dreamdaisy

Oh what a struggle for you, I do sympathise. There are many forms of arthritis and it can take some time to find an accurate diagnosis (nine years in my case). Very generally speaking GPs treat osteo-arthritis and rheumatologists the rest: osteo has different causes to the others, which tend to be related to an over-active immune system. Treatments are very different too. It can be very hard to get people to listen to you - some docs really do have a severe 'God' complex and think they know it all, and they are the ones who do not listen to their patients, refuse them information (why shouldn't you see the scan result?) and are generally obstructive. I think that means they don't know what is up but are too cowardly to say so - I had one just the same at the beginning of my battle. You will have to keep probing and chasing people up - keep in touch with us, we are an experienced and knowledgeable bunch and I am sure we will be able to help. I wish you well. DD

barbara12

Hi Malc
Just wondering how you are, hope you have manage some sleep, and that you feel a little bit better.
Please let us know how you get on.
Barbara x

elnafinn

Hi Malc

I hope you are ok, please phone the helpline today, number at the top of the page. They will help you as they have helped countless other people. Those on the forum who have contacted them have highly praised them.

Look after yourself,
Elna x

sharmaine

Hi Malcome

I'm really sorry to hear your story. First of all I think it's jolly unfair that they have not explained your condition or given you the results of your scan. It is unethical surely for medical professionals to lie - could you ask to see someone else? How can you have faith in a person like that? You have to trust people who take your life in their hands. Your GP would be able to advise you. You are taking the maximum dosage of tramadol and if you're still in discomfort after that then something is obviously very wrong.

Arthritis care have a helpline number see top of page. I would also suggest you go back to your GP for the answers and explain to her what's been happening. Your GP should have copies of everything that has been done or she can access them more readily.

You must be made of some strong stuff to keep playing rugby all these years!

Not fair that you're suffering like this. I hope you get things sorted very soon. Make your GP your first port of call.

Please keep in touch and let us know how you are getting on.

There are some great people on this site and I'm sure they'll give you the best advice.

Take care.
Sharmaine

hileena111

Hi Malc
Let us know the out come of phoneing the helpline
They are excellent

Love
Hileena

c4thyg

Hi Malc,

I'm wondering how you are doing today? I see that the help team have replied. Please contact them, they're very good.

Take care of yourself.