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Date: 02.02.2009
From: James

Subject: What do you think is the worst thing abount having arthritis?

Looking at doing some research and would like to know what the worst thing about having arthritis is for you. It can be anything from not being able to walk to not getting to sleep at night or not being able to drink from a cup at times.
Thanks for your time.
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Date: 10.02.2009
From: Emma

Subject: Re: What do you think is the worst thing abount having arthritis?

Not knowing how you going to be from day to day, people not understanding how you can be ok one day and not ok the next, employers understanding it - they never do and the tiredness.
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Date: 11.02.2009
From: Kristn

Subject: Re: What do you think is the worst thing abount having arthritis?

Not to be able to walk,run, play football,walk stairs. Not to be able to dress myself and yes not knowing how this week will be.
Also I was very sad when I had to quit working.
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Date: 12.02.2009
From: Kath

Subject: Re: What do you think is the worst thing abount having arthritis?

I can associate with all the above comments...the loss of the life you once had...losing most of your physical hobbies..just the ordinary things in life that others take for granted like bathing, getting dressed, gardening, going shopping...and worst of all for me the constant nagging pain and low self asteem because you no longer look the same person as before the arthritis started to twist my body out of shape..people judging you at a glance, don't they realise others cannot see your pain only you can feel it.
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Date: 13.02.2009
From: lynh

Subject: Re: What do you think is the worst thing abount having arthritis?

I think Kath just about summed it up. Had to finish work this week because of pain , stiffness, and tiredness
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Date: 18.02.2009
From: Gillian

Subject: Re: What do you think is the worst thing abount having arthritis?

constant pain depleting your energy resources and making it an effort even to socialise with your friends
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Date: 20.02.2009
From: Colin

Subject: Re: What do you think is the worst thing abount having arthritis?

I agree with the all the above and the feeling of being a burden on you wife and family. The simple things in life are the best, like going for a walk with the one you love!
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Date: 24.02.2009
From: James

Subject: Re: What do you think is the worst thing abount having arthritis?

I'd like to thank all the people who very kindly donated their time and effort into this post. I will certainly take this on board and hopefully others will add to the thread.

James
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Date: 25.02.2009
From: suszannah

Subject: Re: What do you think is the worst thing abount having arthritis?

I only have hip arthritis and a heriated disc, my pain is bad but nowhere near like the other people on here, what i miss most......

putting socks on myself
cutting toenails
not being able to dance, play pool, bowl cannot drive far..and getting out of car is a nightmare if i can get in it in the first place.

55 and feel 95 makes you feel a second class citizen, people cannnot see what we feel, maybe we have a good day and can walk a little better or do something we have not done in a while and get comments like "i see you are better then"
The worst thing for me is i am allergic to most medication and can only take paracetamol...which does nothing at all...hope this helps
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Date: 25.02.2009
From: Jill

Subject: Re: What do you think is the worst thing abount having arthritis?

having to totally re adapt your lifestyle, on top of that the misery of the pain, the weight gain, and self esteem drops bad... giving up work and then money is tight, Having to take the drugs to help, but find that the pain is still there, and for me, having to have Corrective surgery, I have had 4 ops in 18months...shoulders(both) 2 ops on Hip(still in agony) now awaiting another spine op, But on top of all of that, and Im sure James everyone on here will agree, its having to wait ages months sometimes just to get to see your surgeon or Rhumatoligist, My rhumy has told me he cant help me any more, and that my Pain has a Lifeline of its own!... I also worry about the future,if we feel like this now, what happens when we are in our 70s? scary... hope this heps
PS thank god for the computer!

jill
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Date: 25.02.2009
From: Kimberley

Subject: Re: What do you think is the worst thing abount having arthritis?

The tiredness is the worst part for me, I have no energy, everything is a struggle and a strain, my joints don't ache too badly and when they do I can take some pills to take the pain away but the tiredness is just never ending. Then you go to bed and are too uncomfortable to sleep lol!
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Date: 10.03.2009
From: Lisa

Subject: Re: What do you think is the worst thing abount having arthritis?

Irratibility - The lack of energy and the constant aching causes irratibility...I snap and frown at people and then spend the rest of the day feeling guilty and not liking myself very much for being so mean.
Jealousy - Watching and listening to other people going about their normal lives with ease while everyday is a strain for me.
Worry - that I am/will become a burden on my husband and daughter as I get older.
Frustration - that I am always the first to leave a party (even at my aunties 90th!)
Sadness - that there are things that I just can't do with/for my 3 month old daughter
Embarrasment - when people ask me what I have done today... and I am still in my dressing gown... having done NOTHING!?!!
Anger - that people assume that because they can't see it... it can't be that bad!
And that James was just today.
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Date: 16.03.2009
From: girlwonder (not a good day)

Subject: Re: What do you think is the worst thing abount having arthritis?

the worst thing.......feeling like a total moan..sometimes i feel like all i do is moan..i get annoyed with it..feel really angry lately with it!
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Date: 16.03.2009
From: Jill

Subject: Re: What do you think is the worst thing abount having arthritis?

So do I Girl wonder....lets SCREAM together! ARGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!

Hope you feel better tomoz.... by the way, what part UK are u from? Im in East Sussex....
take care

Jill
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Date: 16.03.2009
From: James

Subject: Re: What do you think is the worst thing abount having arthritis?

I keep checking back to see that others have added to this thread. I very much thank you all and when the report is written I'll certainly give a free copy to anyone who wishes to read it. Thanks again for all the comments and time people have given.

James
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Date: 16.03.2009
From: suszannah

Subject: Re: What do you think is the worst thing abount having arthritis?

glad to be of help James and yes i would like a copy of the report.... many thanks
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Date: 17.03.2009
From: anita

Subject: Re: What do you think is the worst thing abount having arthritis?

people rolling there eyes when say you are in pain. people just think you are always whinging
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Date: 18.03.2009
From: Kristin

Subject: Re: What do you think is the worst thing abount having arthritis?

Thank you Jill... I made a LARGE SCREAM and I feel better. :)
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Date: 23.03.2009
From: mary

Subject: Re: What do you think is the worst thing abount having arthritis?

hi james
after 22 years there I find that I have accepted that I can't run or even walk very far. kneel,bend at the knees...have to wear sensible shoes. showering, dressing and the list goes on.
The feeling of not being in control(not that i am a control freak)
the never ending fatigue.....

mary
x
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Date: 23.03.2009
From: Jill

Subject: Re: What do you think is the worst thing abount having arthritis?

exactly mary, totally agree with you, I use to be Hyperactive, taken me years to accept this insidious illness, and then on top of that, apart from the frigging pain, we get the fatigue on top...plus the meds make us tired.... I now make sure that if Im tired I will go and rest on my bed, on the days that I dont need to go to bed, its a huge triumph, and a relief! But I wont beat myself up about it anymore, I refuse to feel guilty if I need to go bed on a sunny day...if it makes me feel stronger and better for the next day, thats what I have to do

so all of You guys out there that need to rest lots, do it, and dont feel bad

Take care
Love Jill
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Date: 16.04.2009
From: James

Subject: Re: What do you think is the worst thing abount having arthritis?

Thanks once again for all your replies.

I need 15 guinea pigs for an experiment. You will not be harmed in any way or have to leave your home. You may even get some relief.

I only need 15, so the first 15 that contact me will be the ones picked. Send an email to me at leighinmohr@aol.com with 'Guinea Pig offer' in the subject line.

Thanks again for all your efforts.

James
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Date: 17.04.2009
From: mike heery

Subject: Re: What do you think is the worst thing abount having arthritis?

hi i was told last year i osteo arthritis on my hips and shoulders , the doc gave me a perscription for dona for a few months , should i stay taking i wonder,.but i never got to worried about this condition as i thought it was my age and the weather effecting me,.i not sure if it gives me depression or other mixed up mental effects,i just hate thinking about the future , i keep thinking i will get better if i keep walking and cycling and forget about this condition,.i wonder if i am correct or should i get vitamins or medications,.iam 57 male. i just do not want to be considered as a sick person,.
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Date: 27.04.2009
From: Jill

Subject: Re: What do you think is the worst thing abount having arthritis?

OMG what are u going to do with the Guinea Pigs, and Y would anyone Invite a stranger into their house?? this does not make any sense...Expalin please, what Magical cure do u have in mind??
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Date: 27.04.2009
From: Jo

Subject: Re: What do you think is the worst thing abount having arthritis?

I think the frustration of being tired gets me down about this illness! The trouble with me is I carry on as normal; work, taking child to football practice etc etc, then I get completely burnt out! I recently caught a flu virus and had to spend 3 days in bed .....

I had to postpone my infusion because I need to be bug free!

I also get scared of getting crippled, especially losing the use of my wrists but I suppose with everything - if it happens slowly you accept it easier than if you woke up one day and were completely unable to do a thing!

On the upside I have a very supportive partner and family who nag me to rest all the time!
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Date: 28.04.2009
From: Beren

Subject: Re: What do you think is the worst thing abount having arthritis?

One of the worst things for me is being absolutely tired out and yet being unable to sleep. I begin to have a glimmer of understanding as to why sleep deprivation us used as a form of torture.
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Date: 28.04.2009
From: bernie

Subject: Re: What do you think is the worst thing abount having arthritis?

For me its not being able to drive,do my normal job,having to ask people to do things 4 me.Feeling miserable,maybe I feel sorry for myself.I need to find a support group in my area.
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Date: 30.04.2009
From: Joyce Ambler

Subject: Re: What do you think is the worst thing abount having arthritis?

I have memory flashbacks related to your comments about having a problem getting in the car or out of it. I had this terrible problem along with limping, muscle spasms in both legs and general depression until I got a hip replacement. Then, most of these problems disappeared never to return. I think you should look into it. Often HMO doctors will just give you lots of heavy drugs or pain patches to help you keep working or get through the day. What SHOULD happen is they should help you get on disability and get the surgery. I waited until I retired and had medicare before I got my hip replaced. I could have had it done much earlier saved my myself years of misery.
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Date: 30.04.2009
From: Joyce Ambler

Subject: Re: What do you think is the worst thing abount having arthritis?

I want to add that I have tried many different treatments over the years. #1 - get a diagnosis. I have Osteroarthitis, confirmed by a blood test. I also have Ankylogin arthritis of the lower spine that started when I was in my 30's and resulted in a bone overgrowth on the tailbone. Both these conditions could have been slowed down with proper treatment which was not available back then. I know my arthritis is genetic and has a linkage to anglo-saxon genes. I am a U.S. citizen but my kin on one side of my heritage were Engish/British and have often had the arthritis disease. I believe in using Glucosamine and SAM-e as a helpful supplemental regime, plus good vitimin nutrition. I also experienced weight loss which was helpful in alleviating my pain and discomfort. Plus hip replacement as described above. Advice: Do not overwork your hips and knees when you are in pain and have muscle spasms - no matter what others might say like "oh, just walk it off; you need more exercise" - this aggravates the disease. But, AFTER surgery you may find you can move with easier and should walk, walk, walk as much as you can. It makes you feel better, emotionally as well as physically.

Right now I am suffering with a seasonal change in the weather which has promoted a painful flare-up. I am ready to hear about others' experience with this and what pain relievers and food do's and don'ts they find helpful. I was using Declofenate (a prescribed NSAID) since my surgery which worked great until recently. My Mom use to say that she had to switch from one NSAID to another now and then to keep relief coming. So, tomorrow I am trying Naprosyn again. (Aleve over the counter brand).
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Date: 10.05.2009
From: Andrew Patrick

Subject: Re: What do you think is the worst thing abount having arthritis?

I have just had a quick run through all the comments and wonder that no one seems to have mentioned what I think is the worst aspect of arthritis. Once you have it you know there is no cure and you know it is not going to get better just worse. I am sixty and have generalised osteo-arthritis.
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Date: 10.05.2009
From: Jill East sussex

Subject: Re: What do you think is the worst thing abount having arthritis?

LOL guess we havnt mentioned that bit Andrew becoz all of us that suffer from this Insidious disease dont infact have to say and remind each other that there is no cure.

my Arthritis has got worse over the years, had it since 26 and Im now 48, its premature ageing, thats How I cope with that Question! Osteo arthritis is due to wear and tear, everyone gets it eventually, but the difference from having that type, to the type that lots of us suffer from is far far worse in my Humble opinion...how long have U suffered with Osteo? Mine is a secondary type Arthritis due to a very very rare disease called REITERS disease, due to a defective Gene, and Im very angry that I now suffer from Inflamatory Arthritis, Im on Immune Suppresants, which are Toxic... I have had 7 Corrective operations on various joints due to inflamation damage! Are Osteo arthritis Sufferes on these Type of Meds? just curious.... stay well

Jill
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Date: 14.05.2009
From: Andrew Patrick

Subject: Re: What do you think is the worst thing abount having arthritis?

Hello Jill,

I take your point but this was an enquiry from someone on the outside looking for information from sufferers.

I am sure there are a lot of stories as to how and why individuals have arthritis. There are so many types! My rheumatologist in Ysbytty Gwynedd (Hospital) is a Professor Maddison and he put my arthtitis down to genetic factors. My mother and maternal grandmother both suffered badly. So it is not always down to wear and tear. Those who do suffer wear and tear damage presumably have it in a limited number or even single joint. I have generalised or widespread osteo arthritis with inflammation. It affects my joints from head to toe! At my request I had my hips xrayed recently and had a referral to an orthopaedic surgeon to see what he thought. After he arranged more xrays he showed me why I was getting pain in my hips, my lower spine has advanced arthritic degeneration. Now that cheered me up no end! Hips we can replace when you need them, spine inoperable.

As to when it started, I can trace it back to about age ten and a gradual reduction in physical prowess. It hasn't stopped me leading an outdoor physical lifestyle but it hasn't helped. At sixty I am struggling to finish a small renovation project in S W France. The clock is ticking!!!!
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Date: 14.05.2009
From: Jill

Subject: Re: What do you think is the worst thing abount having arthritis?

Thanks for your reply, I love the south france,Im sure you will finish that renovation, your still young! I have the same prob as u, genetic also, i need another spine op due to Disc degeneration! some spine troubles are inopearble, rotten huh? My Mum and Great grandmother suffered real bad also, I try and take one day at a time, are they going to replace your hips? or is it becoz of your spine yur having Hip pain, i have Hip pain becos of my back, and also had two ops on my right hip! on methtrexate and Enbrel, but the Disease still is getting thru, dont understand y.

take care

jill
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Date: 17.05.2009
From: Andrew Patrick

Subject: Re: What do you think is the worst thing abount having arthritis?

Another 'worst thing about having arthritis' has occured to me and I don't think it has been mentioned yet. Having to describe the nature and extent of the pain for benefit claims to the DWP and ATOS. There are a lot of good WWW sites out there offering help and advice about benefit claims and about arthritis in general but I have yet to find one that helps in this regard. One that gets down to the detail of sufferers pain and gives the 'tools' to describe it. Has anyone any ideas on this subject?
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Date: 17.05.2009
From: Jill

Subject: Re: What do you think is the worst thing abount having arthritis?

Your right there Andrew, nightmare having to write disability forms, so long etc... I cant write for long, hands and fingers hurt, Y cant the GP just send a form for us on our behalf each year. My GP knows me well, dont need to tell him how I am, my Meds say it all!!
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Date: 26.05.2009
From: val h

Subject: Re: What do you think is the worst thing abount having arthritis?

to start with i did not think the over whelming tierdness was part of the arthritus it was such a relif when i read about others feeling it did not mention it to doc on first visit thought she would think me mad but after reading some of the posts on this made me realise she should be the one to decide what is or is not relivent so the tieredness and the fear r the worst
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Date: 26.05.2009
From: Jill

Subject: Re: What do you think is the worst thing abount having arthritis?

Val Hi Your right there, its the Tiredness, the fatigue, its terrible, they never told me that either, had to find that out for myself, but I guess they dont bother mentioning it, becos they see so many of us, I guess they assume we wld know? I found out by research and by hearing like u have on forums like this....I use to feel so guilty. going to bed etc, but I dont now, I treat myself kindly, dont get the guilts like I use to

jill
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Date: 28.05.2009
From: val h

Subject: Re: What do you think is the worst thing abount having arthritis?

hi was great to hear that jill it leaves u feeling old before your time on bad days, this is one. but i am lucky once tabs kick in things will b much better unlike a lot of people on here the saying there is always some one worse off than u is so true i hope every one else on here having pain free day
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Date: 28.05.2009
From: Blogger

Subject: Re: What do you think is the worst thing abount having arthritis?

The worst is having a long history of Inflamatory athritis and having to fill in several thousand sheets of information duplicated by doctors, consultants and several government agencies before you are rejected for benefits.

The benefit system has been created to keep a lot of people in work with handsome salaries
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