OA cycles?

mellman01 · 10. Feb 2010, 07:19

Well here we go again; it’s been 2 years post op diagnosis and my OA of my knee caps seems to have settled into a cycle of dormancy followed by a period of activity.

So on to my questions.

1) is the cycle of OA inactivity-activity common and or normal

2) The pain I get is like a deep pressure that builds up slowly as soon as I start standing up and moving about, it also carries on building for some time after I have sat down, again is this normal for OA?.

3) Sleep these days isn’t good, is this due to my OA disturbing REM sleep?, normally if you don’t go into REM you feel awful during the day, this is part of the reason you can feel rubbish the day after a few to many drinks the night before.
So again is the why I feel so tired these day’s?

I apologies in advance if I have repeated my questions from any previous posts but OA seems to disrupt my thought patterns and long term memory, well that’s my excuse!. :roll:

sharmaine · 10. Feb 2010, 07:47

Hi Mellman

I have OA in both knees. The left knee has been giving me problems for over 25 years. It always ached. However, it was only 3 years ago it was correctly diagnosed as OA and since then both knees have been affected. I have my first TKR on Monday. I found that in the early years I took painkillers to relieve the aches and simply rested. If I overdo things I know about it because my legs get stiff and swollen. I have little choice but to rest when this happens. I find going up and down the stairs difficult and walking a real problem. These past few months I have had to rely on my OH to make the beds and he does the vacuuming; loads the machine etc. I order the food shopping online because I simply cannot walk on the supermarket floors. If we go out to the town centre for the day I have to be in a wheelchair. At home I get about with my walking stick or my elbow crutches. I set myself little targets each day. For example today I'm going to do a bit of ironing (sitting down) and a few chores maybe dust the living room furniture etc. I have a perching stool which is a godsend in the kitchen.

If your mobility gets worse then contact the Occupational Therapist at the Social Services and they will fit handrails up the stairs; loan you raised toilet seats; a perching stool and other aids to tie in with your disabilities.

I found sleeping a real problem and was waking up in pain and my joints were stiff. My GP prescribed amitriptline one at night at the beginning but now with full blown OA I take 3 amitriptlines at night together with my other meds (diclofenac 3 a day; co-dydramol 8 a day). You may need to see your GP again.

I bought some memory foam pillows and a memory foam mattress topper and this makes lying down more comfortable. I also changed my duvet to a feather and down one. I sleep a great deal better. If I have a flare I find elevating my legs (using a memory foam pillow) during the night helps. Or you could try 2 pillows one under the knee and the other under your calfs and feet.

I had to give up my job 2 years ago because of my condition. It take me a while to get going in the morning - the amytriptilines are a powerful relaxant and make you feel lethargic (but not in a bad way). Lack of sleep and arthritis is a terrible combination. We face the day so much better and with a bit more energy if we are rested.
After I gave up my full-time job I booked a double appointment with my GP. She was marvellous and told me that I was suffering with fatigue. Sometimes you need to make time to sort out your health issues and I was glad I went to see her.

I'm afraid I don't know much about REM sleep...! I do have some interesting dreams since taking amitriptiline! They are vivid and colourful but not alarming.

I hope this helps.

Sharmaine

mellman01 wrote:

Well here we go again; it’s been 2 years post op diagnosis and my OA of my knee caps seems to have settled into a cycle of dormancy followed by a period of activity.

So on to my questions.

1) is the cycle of OA inactivity-activity common and or normal

2) The pain I get is like a deep pressure that builds up slowly as soon as I start standing up and moving about, it also carries on building for some time after I have sat down, again is this normal for OA?.

3) Sleep these days isn’t good, is this due to my OA disturbing REM sleep?, normally if you don’t go into REM you feel awful during the day, this is part of the reason you can feel rubbish the day after a few to many drinks the night before.
So again is the why I feel so tired these day’s?

I apologies in advance if I have repeated my questions from any previous posts but OA seems to disrupt my thought patterns and long term memory, well that’s my excuse!. :roll:

frogmorton · 10. Feb 2010, 07:54

Hi Mell
What a great reply form Sharmaine eh?
Hope that reassures you.
I was going to suggest amitrip if you dont already have it?
Also you don't need to apologies on here

When I am in pain I can only think of the pain

You know that

Love
Toni xx

mellman01 · 10. Feb 2010, 08:56

Thanks for the reply Sharmaine and hi Toni!.Yes I take Nortriptyline but don't like the side effects but it's really good for my neck problem more so than my knees, and I takeTramadol, I also find sleep is disturbed and the only thing I can do is rest until the flare or whatever you call the dam thing dies down.
Thing is I am still working and am going to be made redundant in 3 years and I imagine my general quality of life will degrade until the pain is with me full time, I’m not really employable as it is so what I will be like then god only knows, at some point in time I will need a double TKR., the surgeon told me 10 years due to age, he also told me my level of OA is a 6-7 on a scale of 1-10 and 10 is when they operate and if I carry on like I am he would predict that I will have worn the rest out in under 2 years!.
Problem is I’m only 48 and feel that I’m really up a creek with this, the company Doc told me the week that he can’t work out why I’m in so much pain!?, my reply was I don’t either as I have never had this before, I get the impression that a few health professionals I have come into contact with have the same view, isn’t it great how pain isn’t a problem when it’s not you that’s got it.
Problem is now I also have a new promoted staff person who is singling me out for special treatment so things are going to get a tad rough for me I guess, to tell the truth I am past caring right now!.
Sorry to moan but I’m really down right now.

sharmaine · 10. Feb 2010, 09:29

Hi Mellman
Having the double whammy of OA in both knees is blooming difficult - I know. My GP kept telling me that I was too young to have TKR but with each passing week I knew I was getting worse and more disabled by the arthritis. It was only when I came in using a walking stick and had a chat with her about the discomfort I was in she agreed for me to have new xrays. This was last April. The xrays indicated that my knees had seriously deteriorated. I soldiered on with work until one day I couldn't take it anymore. The drive into the city was killing me and a full day of work was too. My OH insisted that I resigned. I recklessly did resign but maybe I should have pursued other avenues first ie DLA and ESA. After 2 months of getting better deals on the mortgage, tv, broadband phone, insurance etc (I was surprised how much I saved it was nearly £300 a month plus the £260 a month I was paying for petrol and parking). I decided to apply for IB (incapacity benefit) now ESA. I was successful. I am considering applying for DLA but want to see how I cope after this operation. It's not much but it helps to pay the bills. I also applied for a PPI (pre payment prescription card) and pay monthly - I have so many meds that this saves me a fortune.

Being home has meant that i am more organised (and have even organised OH!! ha - he's been in training for the past six months learning to iron, wash, make the beds, do the garden etc). He's very easy going and understanding so I'm lucky.

What I'm trying to say is that there are options out there for you. You may be able to work less hours and claim ESA or DLA. Take a couple of days off and focus on this. Sometimes we don't see the wood for the trees. Don't despair because where there is a will there is a way. I have found ways and means of making the loss of my salary work and after two years it has worked quite fine.

Have you seen your Occupational Therapist to sort out aids around the home yet?

My heart goes out to you because OA in the knees is tough. I have it in my hands (not so bad there) and in my right shoulder and I pray that it doesn't go anywhere else.

This newly promoted person just ignore them. If I had done things differently I may have asked to see my employer's Occupational Therapist and negotiated better working conditions, shorter hours etc. I went through months of despair prior to resigning and realised that quality of life is so much more important.

Find a way to make your life easier. You deserve it.

There are people out there who will help you, including your GP who will help with sick notes, disabled parking badges etc. The CAB can help you too with filling in forms etc.

Take care.

sharmaine
XXX

mellman01 wrote:

Thanks for the reply Sharmaine and hi Toni!.Yes I take Nortriptyline but don't like the side effects but it's really good for my neck problem more so than my knees, and I takeTramadol, I also find sleep is disturbed and the only thing I can do is rest until the flare or whatever you call the dam thing dies down.
Thing is I am still working and am going to be made redundant in 3 years and I imagine my general quality of life will degrade until the pain is with me full time, I’m not really employable as it is so what I will be like then god only knows, at some point in time I will need a double TKR., the surgeon told me 10 years due to age, he also told me my level of OA is a 6-7 on a scale of 1-10 and 10 is when they operate and if I carry on like I am he would predict that I will have worn the rest out in under 2 years!.
Problem is I’m only 48 and feel that I’m really up a creek with this, the company Doc told me the week that he can’t work out why I’m in so much pain!?, my reply was I don’t either as I have never had this before, I get the impression that a few health professionals I have come into contact with have the same view, isn’t it great how pain isn’t a problem when it’s not you that’s got it.
Problem is now I also have a new promoted staff person who is singling me out for special treatment so things are going to get a tad rough for me I guess, to tell the truth I am past caring right now!.
Sorry to moan but I’m really down right now.

mellman01 · 10. Feb 2010, 09:31

Thanks Lynn, I feel my bigest problem is it flares up, (is that what it's called??) then goes away, I just can't get my head around how it can do this, is this symptom common for OA!?, people here treat me as if I'm taking the rise as I'm not in a flippin wheel chair, the worst thing is I walk with a limp some days. :?

Also thank's Sharmaine, I am totally ticked off with it, it's robbed me of so much, when I'm in pain like now my mood gets really dark, all my hopes and dreams have all gone up in smoke, I had such big plans for my work future etc, I never figured I would end up like this, it just wasn't meant to happen but now it has I'm treated like a flippin leper, it'sas if I'm guilty of some terible crime.

sharmaine · 10. Feb 2010, 10:07

Hi Mellman

Last June I had a flare that last nearly a month. It really got me down. I know why it happened - I had done too much. I organised a surprise party for my son - and just before that we had a new kitchen fitted. It was just too much going on. Like yourself I could have gone far in my career and had a jolly good pension but it wasn't meant to be.

I think most people with OA in the knees end up walking with a limp as the joint deteriorates.

You are not a leper - just a person who has arthritis which is painful and has an impact on your life and how you live it. Try and have a rest and talk to someone. I think there's a helpline on the arthritis care site.

I was slightly hurt by a comment made by my DIL the other night when I said I was slightly terrified about my TKR on Monday. She said rather bluntly "They do thousands of these operations each year" you'll be fine". Thinking about it I don't think she meant any offence (well I hope not) - it's just the way she is - brusque and to the point. It's our bodies that are affected not our brains - and this condition does make you emotional especially when you're feelng down.

Take care Mellman. Lots of cyber hugs to you.

Sharmaine

quote="mellman01"]Thanks Lynn, I feel my bigest problem is it flares up, (is that what it's called??) then goes away, I just can't get my head around how it can do this, is this symptom common for OA!?, people here treat me as if I'm taking the rise as I'm not in a flippin wheel chair, the worst thing is I walk with a limp some days. :?

Also thank's Sharmaine, I am totally ticked off with it, it's robbed me of so much, when I'm in pain like now my mood gets really dark, all my hopes and dreams have all gone up in smoke, I had such big plans for my work future etc, I never figured I would end up like this, it just wasn't meant to happen but now it has I'm treated like a flippin leper, it'sas if I'm guilty of some terible crime.[/quote]

chris7 · 10. Feb 2010, 15:22

mellman01 wrote:

Thanks Lynn, I feel my bigest problem is it flares up, (is that what it's called??) then goes away, I just can't get my head around how it can do this, is this symptom common for OA!?, people here treat me as if I'm taking the rise as I'm not in a flippin wheel chair, the worst thing is I walk with a limp some days. :?

Hi Mell
Sorry you are struggling so much, but this is my question too! I have OA in hips and knees, and assumed OA just gets worse over time. I don't understand these really bad weeks which then revert to the normal dull roar I am used to? There is no apparent inflammation or visible swelling, I haven't changed my routine in any way so why does it do this? Is this what you mean?

I have a permanent limp which my 'oh so funny boss' likes to mimic some days! though physio and hydro has helped mobility a little.
I do hope you get some answers on this thread and can make more sense of it than I can. In the meantime, I hope you can get some decent pain relief and some restful sleep.
take care
Chris

skezier · 10. Feb 2010, 15:33

Hi Mel,

Its horrible isn't it? I have oa and pa and I have to say they produce different pain, and as Lynn says the pa, like the ra is ok if its happy but the oa is never happy!

When it comes and goes its 2nd stage as like as not, 3rd tends to be relentless. You need good pain control and if possible keep it moving. I got it in a few places and some is 2nd, 3rd and some thankfully almost burnt out. It depends where you got it but for me if they offer a op I jump at it

They did quite a lot to my feet and it really helped, they also did a huge amount to my spine and that really helped and the knees had a bit and it helped so it can be sorted to a point with surgery but it depends on where and how far its got. Do you see a consultant etc? I really hope it soon goes in to a less active mode. Take care Cris x

mellman01 · 10. Feb 2010, 16:31

Hi all thanks ever so much for the replies you’re a great bunch of chums!, it seems I’m normal from all your replies!, and my OA like yours Chris doesn’t really make my knees swell up, even after my double op they looked quite ok, they go red and hot of an evening and I can’t stand up to do the cooking so I have to sit down, they are always bad at night so in the day they aren’t at their worst.
I’m in mid flare now and it does my head in, I go from feeling OK’ish when sitting just discomfort, just now all I’ve done is walk our into the garden I’m now sitting down and that old sickly pain is building in my knees and shins, as a man I would describe it as similar when you get thumped in the spuds, it doesn’t hit you right away then a sickly pain builds and builds, but only this time it’s in my knees!.
Anyway going to go to bed soon very sleepy so catch you all later and thank you for being here for me, I really appreciate you caring about this old cripple!.

valval · 11. Feb 2010, 06:54

hi yes the lack of sleep does send your brain into orbit or so it feels. have oa in right hip might also left and both knees was so bad couple of weeks back could not stand covers touching my legs at all so got no sleep was awfull . now it has settled down again think i overdid it after being stuck in house with all the snow then walking up to docs was not the best idea i have ever had lol. so good luck you r normal just unlucky to have this

mellman01 · 11. Feb 2010, 08:05

valval wrote:

hi yes the lack of sleep does send your brain into orbit or so it feels. have oa in right hip might also left and both knees was so bad couple of weeks back could not stand covers touching my legs at all so got no sleep was awfull . now it has settled down again think i overdid it after being stuck in house with all the snow then walking up to docs was not the best idea i have ever had lol. so good luck you r normal just unlucky to have this

Thanks val!.

frogmorton · 11. Feb 2010, 08:32

Hi Mell
This is such a lovely forum isn't it?

All that support makes you feel so much better mentally, but I am hoping you are feeling a little better physicaly today?

Somehow from somewhere we find the strength to keep on going

Love

Toni xx

OA cycles?

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