DESPERATE

rosiebe

Hi everyone,
I'm new to this forum, but not to knee problems. I was diagnosed with chrodromaelacia of the platella about 40 years ago as a child, and more recently arthritis of both knees and swellling of one.
My problem is though that I gained a lot of weight aftger serious illness lasting 10 years and two thyroid ops and many other health challenges. Because of this, i cannot get any doctor to take me seriously. They will not listen when i explain that i have had problems most oif my life and will only ee that i am overweight so that must be the cause of my kneeproblems. after 10 years of non action by on GP i finally was wellenough to transfer to another, who has the same attitude. I CANNOT EXPLAIN HOW DESOPERATE I FEEL, i have spent £200-300 on various knee braces over the last 8 years and nearly £2,000 on a mobility scooter and other aids. I have recently had a lift fitted by Occuptional health and soon a walk in shower but my GP will not support me, I do not get an disability benefit and have to take painkillers just to get up inthe morning. Tonight i just weept at the thought of another painful night andno where to go or help for this condition. i am having another op wwhich wil help with weightloss and have bee diligent in my efforts to exercise, mostly through swimming.
i am desperate, i don't know who to turn to for help and support or how to get my GP to take me seriously...???

caterina57

Hi Rosie
Welcome to our Forum!
I am really sorry to read of your problems and that you are having difficulty in getting your GP to take you seriously.
What I can assure you is that here you will be taken very seriously we are a bunch of people who suffer with various forms of arthritis and are at different stages of our conditions, we know the difficulties of day to day living with a disabling illness, people share tips of what may help and their experiences.
People know their stuff on here although not medically qualified. I am sure that others will be along to help you and you can also telephone the Arthritis Care helpline - the number is at the top of the page.
We support each other in so many ways and I have found some fantastic new freinds here.
We also have a giggle, if you visit the chit chat page you will find Vals cafe where all the food is calorie free! We also have a diet club at the moment and a Gardening thread.
Once again welcome and I hope to see you around the site!
Cath

joann1

Hiya
Welcome to the site i second what Cath has said, on here you will get all the support you need, like she said they might not be medically qualified but if it wasnt for everyone on here giving there support/advice to me i would definatly be at rock bottom, I think all gp surgerys should have leaflets and posters up telling you about the fantastic service that they offer on here.
They will get you smiling again which will hopefully start to make you feel alittle better, just remember everyone on this site knows what you are going through as we all have arthritis in one way or another and they are always on hand to support and advise you.

Jo-Ann
x x

rugbygirl

Hi Rosie

Sorry to hear that you are suffering so much but welcome to the forum.

I have recently been diagnosed with OA of the spine and I have suffered comments of 'you need to lose weight' and 'if you tried exercising it might help'. I tried 5 different doctors before I found one that actually took me seriously and actually told me that I was in a catch 22 situation. I told him what I had been told by other doctors and he said to me that there is no point trying to exercise if your back is painful.

Anyway long story short - I was referred by this lovely GP and when I went to see the orthopaedic surgeon the first thing they said to me was this could be arthritis which is a result of your accident at 15.

These were the first people to mention that to me instead of me mentioning it to doctors and being told that in no way could this be related to the accident as it was far too long ago.

Needless to say I am now a lot better for the help and medication I have received and I am more mobile than I was this time last year.

Keep going to your doctor, try a different doctor in the practice, dont give up. If you have a walk in practice that you can attend then try going to that doctor - sometimes they are more likely to take you seriously and take time to assess you. Dont be afraid to let your emotions show and cry in front of the doctor if you have to.

I can fully sympathise with the pain and having to take pills to keep you going. I cried like a baby most mornings because I couldnt get out of bed or to the toilet without help. I lost my job because I couldnt work without acting like a zombie because I was so doped up on pills. I was like that but fortunately have cut out one set of tablets due to being seen by the correct people.

Have you tried talking to Occupational Health and asking them if they can contact the doctor for you or if they would help you get what you need? It is worth a try.

Dont give up hope you will find a doctor to listen to you but you have to be persistent, Keep going, keep fighting and if you want someone to talk to PM me - I will always be there to help if I can.

Jaki

Poppyg1rl

Hi Rosie,
I'm so sorry to hear of all your pain and suffering, you have come to the right place for support, kindness and care. Swimming is a brilliant way of losing weight, and it sounds like you're really trying hard, well done you!
We are all suffering with various forms of 'Arfur' and know how hard it is to try and cope, nevermind dealing with negative attitudes from the dr's!
Im thinking of you and sending hugs, keep up with the swimming (((((()))))) x

chris7

Hi Rosiebe

Oh my dear, so sorry you have such an unsympathetic GP and no wonder you are desperate! I am glad you felt able to post and that the comments here can give you a little comfort and courage to maybe see a different GP if you can. This forum gave me the strength to speak up with my own doc who now does take me seriously. It can be done though it may feel helpless at the moment I send you courage. You are doing nothing wrong so hang in there.

It has already be mentioned but the helpline really do make good listeners and there is always a ready ear here. Just wanted to call in and acknowledge your cry for help and send a few gentle hugs. ((( )))

Do call in and let us know how you are when you can.
take care
Chris

frogmorton

Hi Rosie

l am so so sorry you feel so awful and have so far failed to find a half-decent GP :sad:

I have just changed (yesterday) for the same reason...cross fingers eh?!

Me being me l tend to keep notes..not epistles but brief notes about how much pain for how long and what l have taken/done to help with it. I never go to teh GP alone anymore, they don't seem to fob me off so easily if l am not alone and you feel stronger yourself with support.

Did you say you had applied for benefits such as DLA and failed? or not tried yet because you think your GP will scupper your attempts? This might not be true as you do have consultant backing if you have had surgery and you health issues should be on record. Every time you see the specialist you should be able to ask them for a copy of the letter they send to your GP. Then copies could be enclosed. If you haven't applied then my own advice would be to get CAB to help you apply and not do it alone. At the moment lots of people are being turned down first go.

You are doing the right thing with your swimming as regards weight loss and am so sorry you are still suffering prejudice as regards your weight :sad:

Glad though that you found us and welcome you from me

Love

Toni xx

elainebadknee

Hi Rosiebe

I know lots of others have replied to you giving you lots of encouragement and support already, mine can be added to them.
Ive had osteochondritis dissecans since my teens and was told when first diagnosed would need a new knee by age of 40...I thought had done pretty well at age of 40 was relatively okay despite having had 3 ops in past to remove loose bodies and five or six debrisions.....Well aged 41 and helping my dad recover from his tkr, my leg went and it has never come good again....That was nearly 2 years ago, walking stick is now a permanent fixture as is blue badge.
Ive always been overweight all my life and even after my first op when i porbably only weighed about 10.5 stone was encouraged to "be lighter"....But its a vicious circle, i cant exercise so cannot burn off as much calories as one can...I swim once a week and am going for a gym 40min free trial next week to see what i can do...
My GP is good but even she at one point after seeing my local ortho, who was awful to put it bluntly, i am now making a complaint about him after he offered to take my kneecap out with no advice or support as to how it would help me...So i took it in my own hands, im cutting back, i lost 6pounds over festive season (last got weighed in march) and i know it will be a long road for me, but im determined to try and lose some weight...Ive found a consultant at wrightington who took me seriously...The other big thing with me was age too, i mean i cant turn back time can I?
I guess what im trying to say is that, i get how you feel...If i go see other doctors they always mention "oh cos youre overwieght this may be a factor"...And you know im clued up so i know what being overweight means, yes diabetes, not good for heeart etc...But im not on HBP tabs, im fine apart from my knee.....I have other little things but dont we all?
If i was you id state how fed up you are as not being seen as a person, keep chipping away, try practice manager....You have aright to be seen as you, not your weight..Have you got support too, anyone who can speak up when youre not up to it..

Good luck..

Elainex

rosiebe wrote:

Hi everyone,
I'm new to this forum, but not to knee problems. I was diagnosed with chrodromaelacia of the platella about 40 years ago as a child, and more recently arthritis of both knees and swellling of one.
My problem is though that I gained a lot of weight aftger serious illness lasting 10 years and two thyroid ops and many other health challenges. Because of this, i cannot get any doctor to take me seriously. They will not listen when i explain that i have had problems most oif my life and will only ee that i am overweight so that must be the cause of my kneeproblems. after 10 years of non action by on GP i finally was wellenough to transfer to another, who has the same attitude. I CANNOT EXPLAIN HOW DESOPERATE I FEEL, i have spent £200-300 on various knee braces over the last 8 years and nearly £2,000 on a mobility scooter and other aids. I have recently had a lift fitted by Occuptional health and soon a walk in shower but my GP will not support me, I do not get an disability benefit and have to take painkillers just to get up inthe morning. Tonight i just weept at the thought of another painful night andno where to go or help for this condition. i am having another op wwhich wil help with weightloss and have bee diligent in my efforts to exercise, mostly through swimming.
i am desperate, i don't know who to turn to for help and support or how to get my GP to take me seriously...???

dorcas

Hello Rosiebe and welcome to the forum.

You've had lots of excellent advice already from others here on the forum I agree that having someone with you during appointments may make your doctor less inclined to be so dismissive :!:

Going prepared is also useful advice and the keeping of a diary between appointments... where you note when you have pain, type of pain, whether there is swelling, redness etc... can help both you and your doc discuss what you are experiencing and what support/ treatments might be helpful.

As you've had a diagnosis of Arthritis in your knees it is unacceptable to be left with the uncontrolled pain that you've described. :shock: especially as there are a variety of analgesics that your doctor could consider.
You haven't said which type of arthritis you have? If it's any of the inflammatory arthers then your doc could refer you to a rheumatologist for further advice. At the very least referral options should be discussed.

I wonder if there would be any merit in seeing one of the practice nurses? In my experience they seem to have more time for their patients ...and hopefully would be more willing to talk all of this through with you.

I do hope things get better for you Rosie....

Iris xx

skezier

Hi Rosie

Welcome to the forum flower and glad you fond it cus I also joined when \i was desperate and it really is the most incredible place.

What to do.... Rosie for years I sat and got eaten by the bone thing with not help and just continually being told there was no money and it wasn't a bottomless pit etc but in my case there is no replacements etc available yet so ....

I sat and gt eaten and then one day.... I changed doctors....

Could you do that? Find a kinder one and one that will see you as a person? They could help with the dietitian thing if they have one in the practice.....

Its so demoralizing to keep being told over and over about weight and no help flower This i know cus my mother was very over weight and its all she was seen as. I also know the demoralization on a personal level but

You do deserve help. You must see someone else Rosie.... this one is no good at seeing you as a person. You deserve someone who will listen and you deserve more help.

You have to believe that to stand up for your self and get them to take you seriously. I know its hard flower but you do have to do it.

A friend of mine taught me two words.... Respect and dignity.... very valuable words for useless doctors those....

Please either change doctor practices and get to see a decent ortho who will help you or see a different gp in that practice... but Rosie really you need to change doctors and I know what not doing that soon enough cost me so please see if you can get a human being for a gp cus now I have and its all so different... I am even learning not to be scared of going!

Can lend you the strength to change this flower and if I could do it for you I would but know your are not alone and stand up and tell them you feel they are not treating you with respect or dignity.... those are very, very effective words...... or they were for me. nice to meet you and you have the strength of this lot to help you do it Rosie. Cris x

tillytop

Hello Rosie and welcome from me too!

Sorry you are having such a tough time and are not getting the support you need and deserve from your GP.

I can't add anything to what has already been said, but just to say that you will find lots of support on the forum from people who really do understand how hard this is for you and hopefully you will feel less desperate about things because you know you are not alone.

Thinking of you.

Love Tilly xxx