Hi and a million questions from a newbie

polly123

Hi guys,

I'm polly from scotland - nice to meet you all. Wasn't sure whether to start a new thread or add onto another one - please move me if you wish!

I'm 49, diagnosed with widespread OA and a slipped disc. I found out early december last year when I woke in agony - couldnt take any weight on my hip - I honestly thought i'd broken it. First my doc thought it was PA - we have a family history of immune disorders - but after an MRI I have OA (a relief to me as I am well aware of the problems associated with immune disorders) and a slipped disc in my lower spine. I've gone from being so relieved that it isn't PA, to struggling. I have a great consultant, and was really optimistic for a while there - began exercising regularly and working on getting my weight down, but seem to have reached an impasse and am struggling to motivate myself.

I was always very active, swimming, hill-walking etc, and now find myself struggling to walk a mile - it takes ages. I struggle in the mornings to get going, and then have a shortish period over the day where I feel ok, and then evenings/nights get worse again. I'm much more limited in what I can do now - I swim 3 - 4 times a week, and can manage 20 lengths slowly, and have bought a cycle and can manage a couple of miles on the flat. I had lost a little weight but it seems to yoyo - i've never had a problem with my weight before but looking back over the past couple of years it's crept on, and i've become stiffer and stiffer - getting out of the car, that sort of thing.

Sorry for the moan - i know i'm much better off than some of you but i'm very down-hearted just now. I've had a busy life looking after my son who has a serious immune disorder - have just started to regain the beginnings of a "normal" life - went to uni full-time, have a part-time job, and now i'm worried how i'm going to continue with my plans.

I guess in my long ramble, my question for you all is this. Is this as good as it gets for me? or can I diet/exercise myself to a little more flexibility/fitness???? If this is it then I need to change my future plans accordingly, and do everything I can to maintain the health I have - but i'm wondering if I put in the effort I may be able to improve my pain/discomfort/stiffness, and be able to phsyically do more. I've asked my doctor this but he won't really be drawn on it, and my physio keeps telling me i'm in good shape for my age - which I probably am but its considerly less good than the shape I was in 6 months ago!

Well, for anyone who has made it this far, thanks for reading

Polly :-)

angie1973

Hi Polly,

I'm a newbie as well and like you have been diagnosed with OA in my hands, knees, neck and lower back. My left hip gives me a lot of trouble, but I am not sure if that is referred complications from a dodgy knee!

I too was very active like you were, I ran 3 miles a day, did loads of hill waking etc, and also like you, my weight has crept up as my activity have decreased and I even had to use a walking stick for a period over the winter as I got very bad indeed.

I am also trying to lose weight now as I feel sure from what I have read it will help reduce the pressure and overall be good for me. If it will improve my OA or slow it, I don't know, since the nature of OA can be indiscriminate, but I'm hoping the weight loss will help overall even if it's just a slight improvement.

I think the swimming you are doing is excellent, so good for you and helps all muscle groups especially good as no pressure on the joints. I hope you feel some good for this, and if you have a warm pool so much the better.

People on here are so nice I just wanted to say hello and welcome too, and from one fellow sufferer to another, I hope you find something to help.

Take care
Ange..

elnafinn

Hi Polly

Welcome to the forum. I am sorry to hear that you are struggling at the moment. I have OA and have had two knee replacements in the past 2 years so that has helped me greatly. Good for you, for swimming very regularly and the biking. I love to ride my bike too. I also have an exercise bike and do 10 minutes on that practically daily.

You do not mention that you are on any painkillers or anti inflammatories. Both have helped me in the past and I still take anti inflams for all the other parts other than my knees that continually remind me otherwise that they are arthritic. :roll: Losing weight is always a good idea in my opinion as it is less weight for the lower joints to carry around but often easier said than done. Could you join some sort of club so there is more of an incentive perhaps?

Taking a bath or shower in the mornings, for me, tends to loosen up the joints, using heat or ice helps me too. I have a wheatbag that I can heat in the microwave. I prefer heat to ice on my joints!
Sounds like your physio is pleased with you. Do you need to use a walking stick when out and about?

Sorry I cannot be of much help but wished you to know that you will get lots of support and help on here. We do understand whereas others may not and just writing it all down can help and you are always guaranteed replies. Ask any questions that you have and again peeps will reply with their views and support.

Chin up,
Luv
Elna x

polly123

Hi Angie and Elna, really appreciate your support!
Elna I have the biggest problems with my hips, but also my neck/shoulders and knees - and its worst down my left side for some reason. I'm trying really hard with the weight-loss - it's going very slowly, but I reason that so long as it isnt going up that's a bonus! I lost 12lbs over the summer, but a combination of not being able to get in the pool when the children are off school, and the weather being so bad for my fledgling cycling i've put it back on again! I'm back in the swing of swimming again, and am hoping to cycle when I feel a little better - am also pondering joining the gym? never used one before though so shall ponder some more :-)

Elna I was taking anti-inflammatories and strong pain-killers until I found out I had OA rather than PA. I stopped everything but have felt worse lately - a week ago I was really bad, and my GP thinks I may have had a trapped nerve around my disc? I wonder if i deteriorated as I'd lessened my exercise - not sure though. So now i'm on a month of painkillers just to try and get moving again - I'd gotten to a point where I was too sore to do much, all the while knowing if I didnt it would get worse.

I used a walking stick over the winter, but seem ok just now - if a little hobbly. I too find a hot bath or shower great - I find some days I get "stuck" in the bath - have to turn over and get on my hands and knees to get out. I'm finding stuff like this quite upsetting to be honest.

One thing I have noticed is that my range of movement is getting smaller - I treated myself to a new dress this week, but when it came I couldn't physically fasten it - its a wrap around one. I was really upset. I picked up the leaflet about exercise in the hospital this week so am trying those ROM exercises, see if that helps.

Polly :-)

angie1973

You could be talking about me. I used the stick over the winter too, but it's eased at the moment so I don't feel so unstable, which I think is weather related or it's slowed some.

I also lost a fair bit then put it back on too. I too have children so it's harder when you have kids to get that time to yourself to do stuff. I work full time so never get time out on my own really as I go home and do kids things.

A lovely soak and heat packs are great for me too, but it's finding time, so I tend to jump in the shower quick!

I stopped taking oral painkillers and anti inflams as they upset my IBS terribly, so am looking at different pain gels instead to see which help the most.

I hope you find something and if you do, let us know. Also, my doctor offered to refer me tot he gym, so I could use the facilities at a specially reduced rate, but they would tailor it to my OA, so it might be worth you visiting the gym and see if they would do that for you, or ask your doctor if he can refer you so you can get a discount on membership.

Sorry to waffle, you just sound in the same boat as me! Take care!
Ange..

polly123

babycham wrote:

Oh Polly you sound so positive like the others and Elna ..just keep everything moveing look at all treatments .....but please keep all those joints going and those muscles strong.........I have given into pain and as a result lost muscle tone and joint mobility so from fit and healthy to a mess basically but I will find away back ......and as you are young at the start dont even give an inch to thisxxxThinkng of youB/cham

Hi Babycham, sounds like you're having a tough time right now - its so hard isn't it when you just can't get going, and of course you beat yourself up mentally as you know its making you worse. It's really hard to fight all the time though. My kids (now grown up) have been really great - reminding me how i've bullied two of them through something similar over years and years - time to practice what i've been preaching now! I do have a much greater appreciation of how hard it's been for them - i'm more in awe of them than ever!!!
It is a scarey time though - and i've realised that some of how i feel is almost mourning for the life that i now can't have - silly i know
keep your chin up (that's exercise :-) ), i shall be thinking of you

Polly :-)

polly123

angie1973 wrote:

You could be talking about me. I used the stick over the winter too, but it's eased at the moment so I don't feel so unstable, which I think is weather related or it's slowed some.

I also lost a fair bit then put it back on too. I too have children so it's harder when you have kids to get that time to yourself to do stuff. I work full time so never get time out on my own really as I go home and do kids things.

A lovely soak and heat packs are great for me too, but it's finding time, so I tend to jump in the shower quick!

I stopped taking oral painkillers and anti inflams as they upset my IBS terribly, so am looking at different pain gels instead to see which help the most.

I hope you find something and if you do, let us know. Also, my doctor offered to refer me tot he gym, so I could use the facilities at a specially reduced rate, but they would tailor it to my OA, so it might be worth you visiting the gym and see if they would do that for you, or ask your doctor if he can refer you so you can get a discount on membership.

Sorry to waffle, you just sound in the same boat as me! Take care!
Ange..

Hi Ange, my kids are grown up now (youngest is 17) so that problem is thankfully behind me! I am full-time at uni and have two part-time jobs, one with the advocacy service and one just starting working with autistic children. I had hoped/am hoping to build a new career.

Good to hear you're feeling better just now - part of the whole stick thing for me over the winter was that i was super-scared of falling and damaging my hip. I really lost my confidence.

Hadn't thought to ask about gym membership at the docs - thanks for the tip, i'll do that

I find that my digestion is iffy now - not sure if its related - but i have to be careful what/how much of certain things I eat. Full-on IBS is dreadful - you have a lot on your plate there, hope you find time for yourself a little.
Polly

polly123

Hi babycham
((hugs)) please dont feel you need to apologise - a forum such as this is the one place you really dont need to!!! I totally understand how you feel - i've been there with my son, and experienced a little of it myself. If i had written my first post this morning, or later on tonight - it would have read much less positively!
I do agree that what you do in the early days can impact later outcome, that's why i'm looking for advice, but we can only do what we can do. Arthritis doesn't exist outside of normal life, and the usual stresses of life are hard enough to cope with without the added impact of arthritis. I'm realising myself that i havent taken it nearly seriously enough - I was feeling better and thought that was me - last week disabused me of that!!! Some days i feel like arthritis is all i am - pain and discomfort. Its really disheartening I know.
Hope you feel a little better soon, and do keep posting
Polly

dorcas

Hi Polly welcome to the forum

I'm live in Scotland too...and there are quite a few of us 'scots lassies' (maybe laddies too) on the forum.

I have PA mostly so wouldn't be good at the advice bit for OA but just wanted to say a quick hello and hope to see you posting around the forums.!

your comment about 'mourning for the life you once had' isn't silly at all. it's a natural part of the process we go through in coming to terms with having such a destructive condition as arther and the limitations it imposes.

Good for you continuing with the exercise and weight loss regime...it has to be beneficial. X

Iris x

dreamdaisy

Hi. I don't have the right sort of arthritis to join in here (not that that has ever stopped me before!) but I will say that eveyone is diferent in how their arthritis affects them and in how they cope with it. Your mental attitude sounds positive, but everyone has down days. Any form of arthritis is tiring and wearing. Keep yourself as active as you can, when you are able - swimming is surely a good thing as you are supported from head to toe by the water. Don't be afraid to use a stick or two for extra support: better that than falling down! Isometric exercises will help to preserve some muscle strength too. Good luck with it all. DD

polly123

Hi dorcas, good to meet a fellow scot, and I appreciate your support. I haven't mentioned the "mourning" aspect to anyone as it sounds silly - and whilst I wish you didnt know what I meant, its good to know its a natural part of this.

Dreamdaisy thankyou for your support - can I ask what you mean by isometric exercises? (I've never gone about exercise in a "scientific" way before, just had a generally active lifestyle)

Babycham so sorry to hear you are so down, but happy you have found support here - hope things look up for you soon

Polly :-)

dreamdaisy

What I understand by isometric is as follows: sit on your bed, with your legs out straight in front of you, a pillow suuporting your knees. Pull your foot uptowards the ceiling and tense the large muscle at the front of the thigh. Your knee should straighten off the pillow so your foot is in mid-air, sort of thing. Another is to stand against a wall, then slide slowly down until you are in a 'seated'position. You use your leg muscles to hold you in place. The only time I slide down walls now is after a good night out. Forget the being held in place!

Umm, it's working the muscles against resistance too, so exercises with large rubber bands are good. Even sitting and swinging tin cans gently back and forth is good for the arms. Every little helps. I must take my own advice and go and do some! DD

speedalong

Hi Polly and welcome to the forum,

I don't know about problems with discs, but have OA.

OA does gradually limit what you can do as it worsens ... thus is the nature of wear and tear. Keeping your muscles strong does help protect the joints somewhat - so keeping up the swimming etc is great. It is a juggling act - high impact exercise will cause more wear and tear but exercise that is easy on the joints and works the muscles helps.

I take anti-inflammatories regularly for OA too - different ones work best for different people and different types of arthritis - it is a trial and error game.

Painkillers - well they are a balancing act too - no one likes popping pills all the time, but if you are in so much pain you can't function ... then that is no good either.

Heat definitely works for me - baths when I can fit them in and wheatie bags.

Priortising what you do each day so you don't aggravate the joints and getting adequate rest are as important as exercising regularly.

I have OA - hips and knees - had one hip replaced 13 years ago and a resurface-replacement in May on the other hip. Replacement/resurface gets rid of the pain, but the artificial joint is never quite as good as the original.

Speedy

valb115

"I haven't mentioned the "mourning" aspect to anyone as it sounds silly - and whilst I wish you didnt know what I meant, its good to know its a natural part of this."

Hi Polly, I'm a newbie too. Sorry about your diagnosis. The quote from your last post (above) really resonates with me. I was diagnosed with a different type of arthritis last week and am struggling with the fact that suddenly the future is likely to be different to how I'd previously imagined it.
I guess the only way forward is to proceed as normal, albeit armed with medication, wheatbags and walking sticks!

angie1973

I went through a bad period where I got diagnosed with fibro and thought 'heh ho, 8 years of constant pain, at now I know what it is'. It was kind of a huge relief to know I had a reason for being so awful.

I'm 36 now and the last 8 years have been horrible, and the pain has been unbearable at times, but I now knew why. Then I went through a period of euphoria like I'd accepted everything because I knew what it was, followed by a really down period of denial and upset and anger that I had been given this illness because of one man who decided to crash his car into me with no thought for anyone but himself. That 5 seconds it took to crash has cost me 8 years.

Then getting diagnosed with OA as well, knowing that my pain was more than fibro because it was so intense and more than feeling like the joints, I knew it WAS the joints was an immense relief again, knowing what it was, and I also feel like a sense of loss again because it's another thing taken from my normal life.

So I don't think you were silly at all for feeling like you are mourning. It's natural, but you sound like such a positive and perky person too, and being positive when you can is a benefit.

I hope the swimming pays dividends for you. I know it makes me feel heaps better, even if I do have trouble getting out!! haha!!

Ange..

cebeem

Welcome Polly
Different Arthritis....but many similarities!
Pain is pain whatever our diagnosis and the anti inflammatory drugs are the only ones that help me get it sorted.....have you been offered omaprozole type meds to help protect your stomach?
I was diagnosed with IBS but it wasnt until emergency surgery (after years of irritation that they found it was the wrong diagnosis) that they offered me that.
Keep pestering them regarding the stomach probs they totally didn't believe me!

Swimming...be careful to get advice with the strokes as keeping the head out of the water unintentionally can flare the neck and shoulders.

Its very uplifting the advice you get on here! But you sound a very positive person and that will go along way to helping you... I wish I had found this place earlier.

I have worked in autism for over 20 years, it is one of the joys of my life good luck with it ...so if I can be of any help with anything in that area please dont hesitate to message me!

*CB*

ailsarobby

Hi Polly...how are you today?? I fully understand how you are feeling..being newly diagnosed myself Im still in some sort of mourning,confused state..Ive always been a strong happy person but being told I have RA..really knocked me for six..mainly cause I did not fully understand what it was...Im a complete book head so went straight to the libary (after seeing GP )its not a very big libary and they only had 1 book..maybe 1 of the reasons people are so ignorant of this illness,,like myself did not got a clue what RA is..so I then went on line to gather more info.....ooouuuu more shock horror...wow what a nasty and unforgiving illness arthritis is ..not just RA...all the others aswell ...i have now been told I have lupus and auto immune disease of the liver and has you can imagine even more cunfusion .its all so bloody depressing...and i suppose its totally natural to feel like you are in mourning...never knowing what bit of your body its going to attack next..I dread going to bed cause i cant sleep because of pain..then i dread waking up cause i know another tough day is ahead of me...I no longer get out of bed I have to turn on my side and roll out and hobble like i have a carpet made of shattered glass...struggle to get my pants down to have a pee cause my hands are so sore and swollen..then get mad and angry cause ive pissed all down my legs... :oops: ........ou eck I seem to be going off the subject and ive forgot now what I was trying to say to you lol.....another problem forgetfullness.. :roll: I think what I was trying to say is...??????uummm forgot again..oh yes :idea: dont worry that you feel you are in mourning part of who you was has been taken away..and you/we have to adapt to not being able to do what we could of done standing on our heads this time last year..its alot to take in ,all the meds..blood test..doctors..rhuematologist...OT...hospitals..lack of sleep...fuzzy heads..pain pain pain...so has you see no wonder we are in mouring...I'm getting to the angry stage now and have no patience at all...alot of cursing going on in my house,,lots of effin n jeffin... :x but on a good note I still do have a laugh and im not (yet) a misserable ****...often found crying and laughing at the same time over the most silliest of things...and I do get out of doing crappy jobs like the gardening and taking the rubbish out..all well ive most probably bored you to the point of reaching out for extra meds..sorry for going on with my self...having good day with my hands..not typed this much in ages,,lol....take care xxx