Acceptance?

polly123

Hi Anna,
It's certainly been challenging! Would give almost anything for a settled period - just a little peace where everything is going reasonably well for a while. I guess most of us want that though :-)

Polly

Boomer13

Yes! Wouldn't that be lovely?!!

Wendy56

This is my first time on this forum, I have had OA for 11 months now and I still find it hard to accept, yesterday I was tested for RA and I am anxiously waiting for the results.
What if I've got that too......
I am so tired is that normal? I am finding work is a real struggle at the moment. People who do not the OA do not understand how you feel, I have not accepted my condition and I think it will be a while before I do.

:!:
Thanks Wendy :oops: rant over!!

stickywicket

Hello Wendy. It's nice to meet you and don't worry about the acceptance thing. It can take time and come in its own way.

I have RA and OA but my OA is a result of many years of the RA which definitely makes you fatigued. I presume your GP diagnosed your OA and has now decided to do a blood test to see if it might be RA. Where do you have it? There are no hard and fast rules but RA normally starts in smaller joints whereas OA makes for bigger ones.

It's true that those who don't have arthritis don't understand it but, there again, none of us really understands another person's illness until or unless we suffer from it ourselves.

Please let us know what the verdict is for you and do join in on any other threads.

dreamdaisy

Hello, it's lovely to meet you and I hope we can help with information and support. I can understand your concern about this but I reckon that it could be the other way round; you may have RA rather than OA. I am seventeen years in living my Life with Arthritis and now have an arthritic foot in both camps, I began with an auto-immune and that has led to OA. Unluckily for me my then GP was not as on the ball as yours so I went for five years without any diagnosis or treatment, hence the mess I am in now.

An auto-immune arthritis (unlike OA) is sometimes not that straightforward to diagnose. I won't get too technical, let's wait and see what your results are first, yes? You are new to this and first we need to establish just what is going on. Please post again on the main part of this board (where all the current topics are) because this is a 'stale' thread and your name may not be spotted by others. I wish you well. DD

[Deleted User]

Hello Wendy
I'm new to this forum,too. I think it is normal that you are tired. It is not only the condition itself, it is the worrying that pulls one down, I guess. If it comes to acceptance- well, do we have a choice? It's just something one has to live with by trying to find the right way to handle it.
Welcome to the club!

Wendy56

Hello

Many thanks for your replies and making me feel welcome to our special club it makes me feel a bit better knowing I'm not alone. Still feeling very tired and I am waiting my test results to see if I have RA as well as OA, I will keep you posted.

Do any of you have swollen feet I have and they have been swollen for a few weeks now, wish they would go down :-( perhaps once I have test results and start treatment I will begin to feel better fingers crossed.

Take care folks and I will be in touch again soon
Wendy :-) x

dreamdaisy

I have an inflammatory arthritis (now controlled by drugs) and yes, my feet used to swell, as did my knees and ankles. As I said, I do wonder if you have an inflammatory rather than OA, it is not unknown to have both types but very unusual to develop both so quickly. My swelling began with my left knee back in 1997, I began my first med in early 2002, the swelling spread to other areas after 2002, and OA was officially diagnosed in April 2011. In my case that has come about due to joint damage caused by my un-treated inflammatory - your GP is on the ball and that is a very good thing. DD

SaraD

Hi Wendy

Welcome to the site. I'm fairlyy new to this too (newby of one week). My ankles swell all the time and if I've having a flare up in my feet the whole foot will swell.

I use it as a good excuse to put my feet up on my bean bag for the evening.

Sara

Wendy56

Hello again :-) I am so glad it's nearly the weekend, I am so very tired and working full time is hard work at the moment especially with my foot being so swollen and not feeling great.

Still no news on my results I may have to ring up tomorrow not sure I can wait all weekend not knowing anything...

Kate I hope you are having a better day. Take care
Sara think I might have use my swollen feet as a excuse to put my feet up too!!
Hope we can catch up soon

Wendy

gande

I started to seize up whilst walking a few years ago and experienced that constant dull pain in hands, knees and hips whilst trying to sleep.

The GP basically said accept it. Deal with it.

As I am only 48 and have seen what can happen to family members. I decided that I would prefer to see if I could prevent things from happening or at least slow deterioration down.

I then did a spot of investigation into the links between improving our circulation and diminishing some the effects of arthritis.

The outcomes have been incredible. No Pain and increased dexterity.

The point of this post is ask other members for assistance in answering how this might have happened; as if we can establish this we could collectively make a difference to lots of many people.

From a selfish perspective I also want to remain pain free as long as possible.

So far I have learnt that physiotherapy and massage can diminish some of the effects of osteoarthritis and rheumatoid arthritis. These processes can sometimes increase dexterity and diminish pain with some people.

Our bodies are like houses. Clean water (blood) IN Dirty water (our lymph) OUT. If the dirty water in the house or our bodies (lymph) backs up disease including various types of arthritis will follow (allegedly).

The reason; is that this stimulates systemic circulation which nourishes the tissue between our joints and lymphatic drainage which means the production of endorphins (our bodies natural pain killers)

deleted by Moderator YEH - advertising.

I now use the same and also cut out gluten, which made a difference.

Basically our lymphatic system can only be powered by exercise or motion. That's great if you can’t exercise. That is why I am interested in anything that stimulates the lymph whilst sitting at my desk or whilst asleep in bed.

The bed bit seems to be ticked off for now.

I have lost about 6KG without changing any aspect of my life style and I assume that this (lymphatic drainage) was excess water that had backed up. If the lymph bit works effectively then blood should reach the tissue between joints.

My concern (like about 20million other people) is day time - chairs and offices.

So if any design types are out there please design an interactive chair or seat that stimulates lymphatic drainage and circulation just by sitting on it. Our scientists have created some great things for sitting down (TV / computers/ football stadiums (eh) but they must wake up to what this might be doing to our wider health.
G
:

SaraD

Hi Wendy

Keep us informed about those results. I know what you mean about work. Unfortunately I'm off work at min so although it's hard, it's not much fun being stuck at home on your own either. It's in my hips today so not sure how I can put them up!!! It's difficult to find a happy medium of rest and movement.

Take care

Sara

stickywicket

If you put 'hip pain' into the Arthritis Care search engine at the top of the page, Sara, the first item on the left is an AC booklet all about it and ways to relieve it. I hope you'll find some of them useful.

SaraD

Thanks Stickywicket. I'll have a look now.

Sara

celebrationb

I have just been told I have arthritis a few weeks ago in my knee which also has a trapped fermol nerve. I feel ok about it sometimes but last three days its getting to me . I was out at a Halloween fun night and with working and walking around I could hardly walk back to the car. It's really got to me I said its not going to ruin my life but its gettiing me down at the moment but trying to hide it from my family

MTMcGuire

gande wrote:

I started to seize up whilst walking a few years ago and experienced that constant dull pain in hands, knees and hips whilst trying to sleep.

The GP basically said accept it. Deal with it.

As I am only 48 and have seen what can happen to family members. I decided that I would prefer to see if I could prevent things from happening or at least slow deterioration down....

.....So if any design types are out there please design an interactive chair or seat that stimulates lymphatic drainage and circulation just by sitting on it. Our scientists have created some great things for sitting down (TV / computers/ football stadiums (eh) but they must wake up to what this might be doing to our wider health.
G
:

In my very limited experience, I have bog standard wear and tear arthritis (ostio?) there are four things that really, really help:

1. Keep your core as strong as you can and the muscles round any affected parts, for me that's knees - both my knees are unspeakable but the latest bout of physio has really been helping.

2. It's worth trying using something like power plate if you can get access to one. These are great for circulation but I've also noticed a difference in pain levels after using one regularly. I think you need to be careful with these but I got the heads up from my Mum's physio who recommended one for her. You can get them without hand rails and just sit in a chair and put your feet on them.

3. Look at the way you move. You will adjust your movements to deal with the pain. So, for example, I walk like a duck, because my knees give way less if I do that. However, it's caused secondary pain in my hip. By concentrating on walking in an un-ducky fashion I have got to the point where I can now sleep on my left side without the hip pain waking me up.

4. If you can, get a super strengthened swiss ball to sit on at the office. They are BRILLIANT. I got one for body builders which is rated to take weights of up to 560kg, bearing in mind that my car at the time weighed 650kg, it should be fairly solid. Make sure it is burst proofed/reinforced though.

5. The right car. For those of us with quality second knees. If the seats will go low and you can drive it safely like that it is so much more comfy. Driving with straight-ish legs stops those embarrassing moments when you have to get out at the lights to unlock your knee. If you spend a lot of time at the wheel it's worth testing the up/down seat adjustor

There you go, that's the feedback, so far, from this newbie. I hope it's helpful.

Cheers

MTM

Airwave!

Hi, Polly-don't worry about OH wanting you to 'get a grip', mine has been like this for years with no sympathy, I'd worry more if she changed!

Wendy-Pain is tiring, so just rest when you need to. I fell asleep yesterday and forgot to cook the stew, I lived to tell the tale!

Acceptance is not a prerequisite for continued living, nice if you can get it but don't worry about it, it took me nearly 40 years to achieve, it is a changing notion that alters as the path of your illness does, hard work keeping up with that!

Have a read through the old posts, there is nothing new in this world, something may strike a cord with you and show you a way through your struggles. Keep smiling.

Its a grin, honest!

Pfcalex

A very interesting post! I haven't worn dressy shoes for years and didnt link it to Arthur until very recently. I have had Arthur since my late teens but every doctor I saw said I was too young to have it so didnt get a diagnosis until well into my thirties. I have not reached acceptance yet so congratulations to any of you who have...I have been aided by all the doctors in denying it for so many years and now I try to hide it from my boyfriend as much as possible. I would love to feel able to say that this disease won't define me but unfortunately it does begin to because it limits quality of life so much so that with the best will in the world, you become defined by it despite your best efforts and if thisis not the case then you have less severe arthritis than me for which I am thankful!

I am only 41 so I sympathise with you all. The worst thing for me was not being able to wear flip flops in the summer. I have found a brand called sole who make specially designed flip flops and other shoes to suit the shape of your foot and have found these to be super comfortable and much better for you than plain flat cheapo flip flops. They aren't cheap but I found a brand new pair on eBay for £15 so it's worth looking there too

Good luck to all

Alex

polly123

Hi Guys,

Haven't been here since the autumn as life has not been great. It's been a year since my diagnosis now (PsA) and at that point I was in a lot of pain and dragging myself around. I'm much improved but still not great and so so tired all the time - I feel like I could just sleep and sleep. I'm trying to come to terms with this being as good as it gets, but to be honest the thought of this is just horrid I'm trying to be more positive but really struggling - was wondering for those who despite treatment don't feel great - how long did it take you to come to terms with it? I'm still working 2.5 days a week but struggling to keep going with this also - and it's another 13 years until I can retire at 68.

Have discussed this with my rheumy - I'm at the max with my meth, and from his point of view i'm doing well as i'm mobile (with limits) for a greater part of each day and inflammation is down. I'm still in pain mornings, and if I sit or stand for any length of time, and overnight of course, but otherwise ok. I do know that others are much worse off and feel bad for moaning, but i'm wondering if the tiredness is ever going to abate? It makes me dread the days when I have to work. I guess I expected to feel better than this?

Polly

markjeff

acceptance is hard to say i have contemplated it .with this illness comes a lot of stigma from other people saying your not ill .and the [XXXX].
ive had arthritis for almost half of my life on occasion trying to take my life to stop the pain .with no help from gp ,specialist, until my fourth attempt only to then get septic arthritis from the ant tnf treatment .to then having to stop it to then have the humiliation of atos healthcare phoning me .
with arthritis comes depression and that leads to despair if life is really worth it some day.
with no more anti tnf for me my life consists of pain and only pain.some day soon im sure when atos get around to me ill just finish it as a none medical person who has never suffered with it in hand legs back and in pain 24 hours a day could ever understand .

[Moderated for use of swearing. You are having a difficult time but please read the House Rules - Mod B]

polly123

Hi,
Thanks for responding - to be honest it really sounds like you need some help - are you saying you are feeling suicidal? If so please do speak to someone, Breathing Space or the Samaritans if you feel your GP is not listening, or the arthritis care helpline. I do understand how difficult atos can be to deal with - have you asked for support from welfare rights or CAB?

You've certainly put my own situation into perspective - I hope I haven't made you feel worse by dwelling on your situation, and hope you manage to find some help soon.

Polly

stickywicket

Oh markjeff, that's so sad. I'm sorry you've had such a dreadful experience of arthritis. I wasn't aware that anti-tnfs can cause septic arthritis but I was once in hospital with a lady who had that in her knee and, for all her stoicism, it was clearly very painful.

In my early years of arthritis there were no DMARDS or anti-tnfs around so I know how difficult it is trying to cope with an auto-immune form of arthritis without them. (Mine's RA. What's yours?)

I hope you are feeling a little better today. It can be hard to be optimistic when there is constant pain and then sometimes other painful stuff comes along and makes it all worse.

I agree with polly123 about ringing Samaritans if you're feeling very low. (I've not heard of the other organisation) Or, you could ring our own Helplines on their freephone number. And, as you'll see, we, on here, do provide support and encouragement for each other with a few laughs too, especially on Chit Chat. Please join us and, at least, feel among people who understand the pain and all that goes with it.

polly123

Sticky Breathing Space are a Scottish organisation, dedicated to those feeling suicidal -what they ask is if you feel suicidal to give yourself some "breathing space" and contact them. I've done there training for my work, and they are an excellent organisation.

stickywicket

Thanks for the info, polly. Always useful to know of these things and well done on completing the training.

markjeff - how are things today?

debram

Markjeff,
Please seek help for your low mood. I felt the same but have had counselling from a wonderful psychologist.
I've had something called CBT-cognitive behavior therapy. It helps you to manage the pain and encourages different meditation techniques.
Also anti depressants have helped me too-I was ashamed to admit it and discuss that in the beginning but I've learned its nothing to be ashamed of.
If people have a problem with me admitting I have mental health issues that's their problem not mine.

My low mood started with all my different medical conditions and as each one was slow to be diagnosed and treated I didn't know what was wrong & felt my body was out of control-in constant pain and no answers.I felt alone and isolated. Family and friends didn't understand.
This forum helped me tremendously!

I'm two years down the line of diagnosis and whilst I still find things hard at Times I find talking to my counsellor or GP or rheumatologist helps.
Also finding out as much info as I could fron arthritis care and using their advice booklets has helped me manage my arthritis better.
I say I've"accepted it" but when Arthur pops up somewhere else I think its about learning to live with it.
I also have physio at hospital and they are teaching me to improve my core muscles. So it's not all about drugs either.

You don't need to suffer alone or in silence-please go to your GP and talk to your consultant.
Hope your ok.