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Date: 30.01.2011
From: tarnlake

Subject: Am I Being Negative?

I wanted to ask for some feedback on here please?
Brief description have stage 4 osteochondritis dissecans of left knee which has got worse in last year, means can only stand on it for about 10mins, walk 25yards, its very sore.....Had arthroscopy, was offered kneecap removal which couldnt find a lot of info on so refused. Sought 2nd opinion which went initially well but when last saw my age (42) was emphasised and weight. Result is I am in consultants words "left alone".
Okay all througout life have always been size 16 at least, a size 10, 12 or 14 will never be in my wardrobe.....Becuase my mobility has decreased have muscle wastage and of coure weight gain.....I swim once a week, walk, do exercises for quad muscles every day, am seeing a dietician, also going to computer courses at learndirect and seeing job centre disability advisor. When I got letter from 2nd opinion I felt it was a negative letter and what is reasonable to others may not be to another ie he says lose reasonable amount of weight but still no mention of what that may be or if I will be seen or "left alone"again. On BMI it says someone my height (5"4) 8stone to 9.5 is normal, over 10stone is obese and so on....Now evern when ive lost weight years ago, I never went below 10.5 or 11 stone so am i always going to be seen as obese? I got told by gp i am negative - I dont see what im doing as that, i just want some guidance, some criteria as they know what they can refuse me on but not what i can do to meet that criteria?
My GP has said this once before about me, i have sought work, even travelled a 60mile round trip to attend an interview that i never got but she feels I can fit into a workplace easily...I dont think its easy for anyone to get a job now in this current climate. Im not a confident person naturally and when people say this to me it gets me down. I have been advised by family however one of whom has had TKR at same age as I am now with no obstacles, another one knows of a person who needs 2 knees but must lose 5 stone, well at least they know that and they can aim for it?
SO can people read this and see if Im being negative, all im trying to do is make life better for myself and i cant believe that this is how is should be, i got told when diagnosed i would need new knee by age of 40 but now that just seems to be an extra excuse and apparently i dont seem to fit the picture of an average person my age whatever that may or may not be, arent we all differnt?...Ive had this condition since age of 18 and then was told not to do a job where i didnt stand all day, which i couldnt do as needed to work, so ive worked all my life and not given into this condition until it has gripped my quality of life...

Thanks for reading, sorry if its long winded.....
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Date: 30.01.2011
From: KayJay

Subject: Re: Am I Being Negative?

No I think you are doing all that you can to improve your life. One can only do their best can't they ? Take no notice of the doc's they usually are quite straight to the point and don't think about comments that can hurt. I got told I was too fat for a Gall stone removal but then you see obese people recovering from op's all the time. It's hard but you have got to stop beating yourself up. Hope someone else can come along with the same condition as you and help you as well. My left knee has been swollen and hurting me these last couple of days even though the Rheumie says he dosn't think I have inflammatory Arthritis [ even though he gave me meds for it !! ] and it may be Fibromyalgia. Knee pain drives you mad [ even when sitting ] so my sympathies are with you - believe me !! Take Care ;0)
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Date: 30.01.2011
From: cookie

Subject: Re: Am I Being Negative?

Your not being negative. Life can be hard at times sometimes life can be a catch 22 situation work can give you a sense of purpose and worth and self confidence. At times if this is missing you dont come across well at interview its so difficult to get a balance if you dont feel supported by your gp find a new one who will give you that support. Keep smiling. Easier said than done i know xxx
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Date: 01.02.2011
From: elaine watson

Subject: Re: Am I Being Negative?

Hi Jaykay

Well I suppose I just couldnt believe my doctor was sitting there telling me I was negative. Everyone else I have spoken to has urged me to question surgeons, ask for criteria but I have found ive hit a brick wall with them. I found my notes from 1st surgeon I saw after arthoscopy (the one who wanted to remove my kneecap) and he made it sound as if he had discussed this with me in detial and also mentioned a high tibial osteotomy which he never mentioned, but he essentially made it sound as if he had been as helpful as possible when he hadnt and I even took my father in with me as I knew he was a tricky customer. So hence when doctor sees it she thinks im ignoring good advice and being dogmatic when im not....But she knows me so should know better....
Knee pain is awful i know, how long have you suffered with yours?
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Date: 01.02.2011
From: elaine watson

Subject: Re: Am I Being Negative?

Hi Cookie

I know what you mean about work. I mean i now walk with a stick, cant manage more than six steps, so im immediately worried how i can get to an interview and how if they like me? Can they accomodate me in a workplace? The answer i havent found as i cant see me in a workplace, i think people would be very dismissive of me and colleagues would resent me being slow and unable to do certain tasks....
The confidence issue is hard, i dont feel much has gone right for me at all in last year....I even applied to do a job i did last year, same job got great exit interview comments but didnt even make interview this time as didnt have relevant recent experience????

Thanks for your input
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Date: 01.02.2011
From: KayJay

Subject: Re: Am I Being Negative?

Elaine it started on new years eve 2000!! That was a night to remember for all the wrong reasons. I was walking with a stick all ready because my back had ' gone ' then my left knee started to hurt and it swelled up alarmingly. I put a warm pad on it and it swelled up even more. I didn't know then to treat inflammation with a cold cloth. DOH!! Anyway I went to a Chiropractor for my back and he said I had Osteo Arthritis of the spine. He helped me with my back but my knee just keeps having episodes of hurting and swelling up.

The Rheumie told me I had Inflammatory Arthritis then did a U turn when my 2nd bloods showed a normal result. Then I had an Isotope scan and I get the results next month. So it's all very confusing. I feel stiff as a board all the time and get pain and swelling in my ankles, hands,wrists,elbows etc. The Rheumie Nurse said it could be my Fibromyalgia but I didn't think Fibro caused swellings ?

I have to walk with a stick and wear an orthotic ankle brace because I have a large bone spur near my ankle and I cant bend it.

Try not to worry about what the Doc thinks it's a waste of energy - just look after number one - you.
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Date: 01.02.2011
From: tarnlake

Subject: Re: Am I Being Negative?

Hey Kayjay

Oh heck that was a new years to remember but for all the wrong reasons huh? So theyre changing their mind from Inflammatory arthritis and saying your fibro is the cause?
I guess Im luckier as in the fact I dont need to attend infusions or get infused. Mine started funnily enough as i was helping my dad exercise from his knee op and that were June 2009, i felt my knee go on downhills and it normally used to right itself after a week or so it just never happned....I then got to see a physio (ex army bloke) who recommended an arthoscopy which is basically the easiest thing they can do surgically.....Ive not worked since last jan but have applied for jobs, the stick is quite a show stealer however.....
Im trying really hard to do things to help, im on co-prox and attend hydro once a week.....I guess I just miss my former life, being able to enjoy a nice walk on a good day, be able to go out for more than 30mins at a time......Havent gone abroad as cant imagine airports and plane journeys......
I know there is people much worse than me butit gets me down after a bit...

Thanks for your nice messages and your story....
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Date: 01.02.2011
From: KayJay

Subject: Re: Am I Being Negative?

Try not to let using the stick get you down you are doing everything you can Hydro etc to keep going. If people are funny with you then they arn't worth knowing. I've got used to mine now been using it for about 3 years but it does get me down when I think how I used to do all my own decorating and jobs round the house. Perhaps once I know what's up I might feel better about it but they keep changing their minds about it.
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Date: 01.02.2011
From: tarnlake

Subject: Re: Am I Being Negative?

Hi Jaykay

Well I can sympathise with you not knowing whats the exact diagnosis with yourself, it must be hellish and you sound tremendously upbeat to me....
Like I said others have it worse at least i know what mine is.....
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Date: 02.02.2011
From: KayJay

Subject: Re: Am I Being Negative?

Thanks tarnlake for your support ;0)
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Date: 02.02.2011
From: tarnlake

Subject: Re: Am I Being Negative?

Your welcome :-)
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