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Update

MaturecheeseMaturecheese Posts: 121
edited 15. Apr 2018, 12:36 in Living with Arthritis archive
I took my last Pred on Friday, went to the gym as usual on Sunday and gave it a bit on the sit down cycle for 45 minutes. I now have swollen knees again :( . It could be the exercise or it could be the lack of steroids. This is great on top of everything else so I can see why people get down about all this. Anyway phoned the helpline today and they said I can't have another drain and steroid injection on my knees yet (+ they are concerned about the infection risk) and try taking some Naproxen for a week or so and see if it helps. They also said that as I'm 5 weeks into Meth they should start to take effect in a week or so. I have my bloods check later and she suggested that I ask them to include CRP on it and she will try to bring my next consultant appointment forward from May. Well I'm off for my Pneumonia jab in a hour before I head for the hospital for bloods. Happy days.
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Comments

  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh this takes me back . . . . a lovely session in the hydrotherapy pool (all ten minutes of it) resulting in forty eight hours stranded on the sofa with knees like balloons: as soon as gravity hit on leaving the pool I could feel the b*****s filling as though they were being injected with expanding foam. :roll: The nap may help ( a little and often is the way these things work, not a blast every now and again and do you have a stomach protector?), you can massage away the inflammation but it will take time to disperse, you can ice the knee to help matters and there will be no more steroids for you for the time being either orally or injected. Great life, innit?

    I am sorry, mate, I know this all too well and even now I haven't left those days behind me. Finding one's limits is part of learning to live with arthritis and it is far from fun. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • trepolpentrepolpen Posts: 497
    edited 30. Nov -1, 00:00
    I used to love cycling , would do about 100 miles a week , its a good way to build the mussels around the knee , but 45 mins may have been to long , Hydropool is a good way for arthritic person with non weight bearing exersize

    as for CRP , I would have thought it was standard to test with someone with arthritis but its good you can take Methotrexate & thought you should have been on a anti-inflamatory drug anyway , rest your knee & it will go down , if you got heat use a cool bag
  • MaturecheeseMaturecheese Posts: 121
    edited 30. Nov -1, 00:00
    Thank for replying people. I guess I'm just going to have to get used to taking it easier than I would like. Having been a gym goer for the last 7 years and some one who likes to give it 110%, going for it for 45 mins on a bike isn't really that much but I looks like I'm going to have to accept that those days are over. I'll try the ice this evening but it didn't do any good last time but you never know. In answer to DD regarding the stomach there is an abundance of Omeprazole in the house as the missus has Functional Dyspepsia so between us we both get prescribed it :D
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    I'm glad you have omep, that's very important. As for the icing, once, twice or thrice a day used to be the norm for me until the meds got things under control: I found a bag of frozen peas the best as they would drape around the hot spots and I could tie them on with a tea towel to achieve at least some compression. Have you come across the acronym RICE? Rest, ice, compression, elevation, repeat as necessary.

    I too was surprised that your CRP was not on the form, it's still on mine together with ESR. I was never particularly active thanks to chronic childhood asthma but once inhalers had been invented I discovered cycling, dancing and tennis. It must be so hard for those who come at this nonsense from a healthy background, I've spent my entire life adjusting my behaviour to minimise payback so it's no big deal. I hope that once you find the right combination of meds to bring things under control you can resume doing what you enjoy even if at a reduced level. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • MaturecheeseMaturecheese Posts: 121
    edited 30. Nov -1, 00:00
    Once again thank DD. CRP wasn't on the last test as I was still on steroids then so I'm assuming it will be on the next one, in fact from now on. I'll try the icing tonight using frozen peas and frozen broad beans and I'll buy a compression bandage tomorrow. I have heard of RICE but i'm a lazy bugger when it comes to things like that, especially 3 times a day, as I haven't got the patience. Obviously future events may change that attitude :)
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    I love your attitude - the way you reluctantly but firmly embrace the unacceptable. You'll find arthritis so much easier to deal with with that attitude.

    It's true, we can only have steroid jabs every so often. Better that way, I think, as my experience is they work less the more we have. Best saved for when we're climbing up walls. As if.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • MaturecheeseMaturecheese Posts: 121
    edited 30. Nov -1, 00:00
    Sticky, I've always been a negative so&so looking on the dark side is par for the course as far as I'm concerned. if it turns out not so bad then it's a bonus :) (fat chance of that though)
  • MaturecheeseMaturecheese Posts: 121
    edited 30. Nov -1, 00:00
    11 days on and knees, mainly the left one , are still with fluid. I have taken the advice from the advice line and it's not really helping although saying that my left knee has gone down a bit, frozen peas on elevated knee three times a day, a week on Naproxen, no gym and stayed off my legs as much as possible. I am fatigued all the time, I literally could go to sleep anywhere if I don't busy myself and sweat buckets at night every night. Awake every two hours whereas on the steroids I was sleeping great. Is the meth responsible for the tiredness and sweating? Oh and the pain is still where it was before I got treated, in my chest, (ribs) sternum,left shoulder and clavicle, and upper legs. Took my 6th dose of meth yesterday, is it ever going to work? Sorry to be a moaning minnie but how often do we get to ask a doctor these questions? Hardly ever around here and if I do half the time they don't really know.
  • trepolpentrepolpen Posts: 497
    edited 30. Nov -1, 00:00
    I was looking if you had RA , the treatment is the same , having rheumatiod facture dont mean very much apart from positive RA & with high RF you may need high dose of drugs

    your knee could do with draining & another steriod in it , you need 24 hours bed rest afterwards , the sleep problems goes with it & not having a good nights sleep will cause fatigue , I would talk to your GP , some take amitriptyline because of sleep problems , be careful buying over the counter drugs like St.John's Wort because they can interact with your medication like methotrexate

    its hard starting out with arthritis but should be better when they get it under control , just try to stay positive
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    The disease is responsible for the tiredness and, in my opinion, the sweating: your body is having to work harder to achieve nothing out of the ordinary and I am positive that ongoing pain makes one sweaty. I wrap my pillow in a bath towel (have done for years) and that helps the night-sweats (I also keep a hand towel by the bed and have a flannel for when I'm out and about). The Spouse is buried in bed under a 13.5 tog duvet, bedspread and two blankets: I'm in my nightie and pull up a sheet if I feel a chill. Waking every two hours? I've done that for years, for me it's due to pain-breakthrough and/or sweating. Draining the knee might be an option but a steroid not, they are not an answer and you have only just finished a course of the oral kind: your body has to relearn to make the natural version. Have you measured the circumference of your knee? Mine ended up at 27" :lol:

    The doctors have no answers because there aren't any: for some the meth works immediately, for others later, for some hardly at all so another med is added: these are still very early days for you, mate, even though I am sure it doesn't feel like it. :( One also has to bear in mind that 'work' may not mean what we think it should or what we have been used to with other illnesses . . . . the forum is populated by those who are not doing that well, those who are don't bother because they probably think we're all like them (and they may not know the forum exists) so it can be difficult to encourage: hang on in there, we know what it's like and truly empathise. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • MaturecheeseMaturecheese Posts: 121
    edited 30. Nov -1, 00:00
    It does look like the knee is going down so I don't know if it's the meds starting to work or the RICE routine that has helped. I'm getting more sharp pains in my knee with movement now which is another sign of the fluid dissipating as it's what happened last time. I'm not bothered about my right knee as it wasn't so bad. Currently my knee is 16 1/2 inches circumference stood up so nowhere near what you had (that must have been sore) Still in pain everywhere else so I'm hoping that'll ease too if it is the meds starting to work. The sweating is a real pain in the rear though. Anyway thanks again for the advice, it's nice to let off steam on here :D trepolpen I have negative RA blood test so they reckon I have 'inflammatory Arthritis' a cover all bases diagnosis but I believe he is erring towards psoriatic arthritis.
  • jennandjennand Posts: 124
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    The disease is responsible for the tiredness and, in my opinion, the sweating: your body is having to work harder to achieve nothing out of the ordinary and I am positive that ongoing pain makes one sweaty. I wrap my pillow in a bath towel (have done for years) and that helps the night-sweats (I also keep a hand towel by the bed and have a flannel for when I'm out and about). The Spouse is buried in bed under a 13.5 tog duvet, bedspread and two blankets: I'm in my nightie and pull up a sheet if I feel a chill. Waking every two hours? I've done that for years, for me it's due to pain-breakthrough and/or sweating.

    Well I never. I have had sweating & hot flushes for 12 years. I have been labouring under the illusion that it was prolonged menopause. Never thought it was the disease. My OH has heart failure, on Warfarin and feels the cold constantly. It is a never ending battle in our house. He puts the heating up, I turn it down. I open the bedroom window, he shuts it when I go to the bathroom, then I open it again. I resonate with the duvet. He snuggles under the 15 tog wearing fleecy Pjs whilst I sleep on top of it. I have a fan on in summer. I don’t know whether to feel relieved or disappointed as I had thought that eventually my hormones would level off and I would feel normal again, but I guess that probably won’t happen.
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    Just to make it clear, jennand, it's only my theory. I did the menopause a few years ago and although the sweats etc. are somewhat reduced in number they are just as strong. Chatting with others who are dealing with ongoing pain for whatever reason have all said they too have trouble with sweating. I also have fibromyalgia and think one of the symptoms is difficulty in controllng body temperature so that could be a factor too. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • MaturecheeseMaturecheese Posts: 121
    edited 30. Nov -1, 00:00
    Just thought I should point out that I don't feel hot, I just sweat a lot in my sleep these days,esp since I came off the steroids. When I get up out of bed in the night to visit the bathroom, if anything I feel cold and I'm a bit shivery when I get into bed at bedtime. Ok in the daytime. Obviously I haven't got a fever or my body temp would be raised.
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    I don't feel hot to the touch but sweat can be pouring down my face, back and arms. My body temperature runs at around 36 degrees but the drippiness would make one think otherwise! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • MaturecheeseMaturecheese Posts: 121
    edited 30. Nov -1, 00:00
    I'm currently depressed about the whole thing, not knowing what I have wrong as it's still early days and their diagnosis is somewhat suspect and I'm full of inflammation again (not so much the joints although my knees are slightly inflamed but generally all over) and a couple of other problems even though I start my 7th week of meth today. Why the hell they can't just give me some steroids again beats me as at least I would be able to function. The codeine is having a bad effect on my ability to visit the bathroom so I have tried easing off but that just gives me more pain.
    Not being able to do pretty much anything, not knowing if we will have to sell the folding camper we bought last year as I might never be able to use it and we were looking forward to using it and going for walks, I especially like hill walks so that's out as well, not knowing if I can go to the gym again, watching my garden go down the pan as I can't do it, the wife having to do more as I can't and she has work to contend with as well.

    Quite frankly it's hard to know how to look on the bright side as I only get to see the Rheumey (well his senior doctor anyway) once every 3 months and then he is aloof and foreign so not talkative. The GP surgery is just as bad, I had an x ray on my shoulder 3 weeks ago today and still haven't been able to see a GP about it and other things yet. We have a system whereby you phone at 8 in the morning and if you get through soon enough you get lucky otherwise tough, try again tomorrow and our surgery, which was manic anyway, has had to take on another towns patients as their surgery closed so now it's nigh on unworkable. The S Wales NHS is probably the worst in the UK so that isn't helping.

    Well I suppose that has helped a bit
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    I am sorry, it sounds as though the reality of this condition is beginning to hit - and hit hard as it does. I had a very general diagnosis for some years, when the specific one came it changed nothing, not the meds, not how I felt about it, nothing.

    One of the hardest things to grasp in this day and age, with all the medical advances that continue to be made, is that with this kind of arthritis a cure is not an option, it is not going to go away, it isn't going to get 'better'. It can take some time to find the right med or combination of meds to be effective for you, and that in itself is mightily frustrating. I soon learned never to raise my hopes when beginning a new med, the repeated dashing of them became too much and I was fed up with so much negativity going on, the negativity of the disease was enough.

    Having been off the meds for far too long thanks to other troubles I am now experiencing a flare, I have no idea when it will end but end it will. I have had years to develop my strategies for coping, you have had a few weeks which is no time at all. I'm not going to bother with trite words of comfort or clichés, it is what it is and it will do what it will do. As I say to my husband, it is a case of mind over matter, I do mind but that doesn't matter.

    Coming to grips with living with arthritis has often been likened to the various stages of grief - anger, denial, bargaining etc. and I think that is true. We have all been through these various stages, maybe just one or two, some people run the whole gamut, but we can empathise: we all get it because we've all got it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • MaturecheeseMaturecheese Posts: 121
    edited 30. Nov -1, 00:00
    Thanks for having the patience to reply DD, I just needed to get it off my chest.
  • daffy2daffy2 Posts: 1,713
    edited 30. Nov -1, 00:00
    I just needed to get it off my chest.
    And that is one of the best bits about this forum - you can have a rant and not have to worry about upsetting loved ones/friends etc, but know that those who read it will understand and not judge. Getting things off your chest is important - having the same depressing thoughts running round and round inside your head is horrid and makes it even harder to cope.
    As DD says we all get it because we've all got it, so keep venting, ranting, sharing - we can take it and you'll feel a little bit better for having let off steam.
  • SloshSlosh Posts: 3,194
    edited 30. Nov -1, 00:00
    It is hard coming off steroids, I had a wonderful 4 months on them a year ago and once the dose started to decrease I soon noticed the difference.
    The adjustment process is hard and it is natural to think back to what we used to do pre- arthritis. I had some counselling to help me deal with a severe bout of depression which really helped and one very useful thing was to accept that I was grieving for the loss of the old me. There are 5 accepted facets to this, denial, anger, bargaining, depression and acceptance and they are not a linear process to be worked through but more circular, there's no set time-span either and even once acceptance is reached it's normal to dip into the other stages from time to time.
    Others can offer more advice on RA than me, but in terms of sleep it is as DD says, just a couple of hours at a time. My GP has prescribed me with a strong antihistamine, Phenergan to help, I take a very low dose for 2 or 3 days if my sleep has been worse than normal as I then tend to start to get anxious about not sleeping which only makes things worse.
    Hope the swelling in your knee starts to go down.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    You're more than welcome, MC (hurty fingers so keeping this short). Re. the 'blocked drain' invest in some figs or prunes and drink more water, if that doesn't ease matters then ask your doc for something. I'm seeing mine soon and will request some more docusate, I find that far more efficient than anything bought OTC. Reducing the dosage won't change the blocking - take that from one who knows. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • trepolpentrepolpen Posts: 497
    edited 30. Nov -1, 00:00
    I'm currently depressed about the whole thing,

    Why the hell they can't just give me some steroids again beats me as at least I would be able to function.

    as for some depression , it goes with having a long term illness , my GP told everyone could do with a bit more happyness from his bottle ,.............grrrrrrrrrr no thanks

    as for steriods , they can be a life saver with asthma & with a maintainance dose ie: 7.5mg but they can ruin your health with high dose & cause diabetes & other serious problems , your consultant needs to get your arthritis under control
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    I'm glad you felt able to say that. We have few answers on here but much sympathy and empathy. Our lives suddenly have to be put on hold. We lack much control at all and we see the weeds, both real and virtual, growing. Of course it's depressing.

    Those of us with more arthritic years behind us know things will pick up again. Maybe not quite as they were but we become adept at modifying our lifestyles and plans to accommodate the arthritis while ensuring it does not dictate who we are.

    Things will improve for you. Just hang on in there.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • MaturecheeseMaturecheese Posts: 121
    edited 30. Nov -1, 00:00
    Once again thank you everyone it does help although I'm having another bad day re depression. I'll start to feel better when I get some improvement no doubt. Edited as I was being ridiculous

    Right ho off the the hospital for my fortnightly blood test where they will tell me my CRP was high last time :) They were high, something like 138 I think but the nurse didn't log it in my booklet for some reason only the other results.
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    One's feelings are never ridiculous although they might sound to be once expressed. I plunged into depression when OA was diagnosed back in 2011 so since then have taken a small daily dose of citalopram because when I am stronger mentally I can cope better, QED. Arthritis affects all areas of our life, not only our joints and tissues but our emotions, feelings, relationships and friendships. Princess Di once mentioned that there were three in her marriage, there are three in mine but the gooseberry isn't human.

    If I read it right I think you mentioned hypochondria, I know that it is a disease in itself but of the mind. Now you are having to face an actual, physical problem and that must be a very different kettle of fish. What did the bloods show? I don't think they are the most reliable messengers, I've felt fine and they've been dreadful, I've felt dreadful and they've been fine. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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