Knee pain

[March2012]

Hi all, Pretty much unable to walk without an aid since Saturday, in unbearable pain, been put on co-codamol by GP but they are having no effect, been signed off of work for a week, awaiting blood test results to see if its a lupus flare. Any suggestions on what could help would be very much appreciated. Thank you

[uzi41]

Hi I have knee and back pain to, was told by the hospital that it's because of my weight, vicious circle cant exercise because of pain cant loose weight. Im co-dydramol but can't take during day because they make me drowsy so im a bit stuck too...would also benefit from some advice. ..take care and rest up..x

Uzi

[garykeanu in reply to uzi41]

Hi I was in the same boat as you joints playing up as weight was increasing daily due to steroids e.t.c, but then my doctor put me onto LIVEWELL a weight management program awesome a little exercise but mainly understanding foods have lost a steady weight weekly 3 1/2 stone in 6 months well recommended give ot a go good luck.. Gaz

[madison]

I too am having the same problems particularly with my knees, I am now under weight after a very nasty flare. Co codamol is making me very sick and agitating my stomach lining, so much so I had to go for a tummy scan yesterday, I would also appreciate any advice. Thank you x

[permanentgrowingpain in reply to madison]

hi i too got stomach issues with cocodamol doc says i shouldnt have well they should take it for a long period and theyll find out

i ended up with gastritis and h pylori set in i also had a lovely bleed the doc sayed what on earth have you been doing i said i had given up sword swallowing some time agp so it couldnt be that

also got ibs and whatever else that causes right side gut nagging pain

prior to all this i had never even had indigestion in my life

waiting to see gastroenterologist rather unpaciently again

[Catlady56]

Hello to March 2012 and Uzi41. I also am overweight and also have a very wonky and painful left knee. Yes it is vicious circle as can no longer walk distance, and have great difficulty in going up and down hills, and as live in Wales that presents some problems as very hilly! I used to walk for miles and also cycled a lot so frustrating that I can't do this anymore and yes I am now fat and finding it a struggle to shift the lard and at 57 I feel old and worn out on a bad day. What I have found to be of some help for knee is gentle exercise on a static bike. A magnetic knee strap ( I had no expectations that it would help at all - but it does). Also found Co-codamol to be useless. Ibruprofen does help, but caused disasterous fluid retention, so stopped that. I now take one dose of paracetamol in morning to reduce pain and then try and "pace" myself knee wise during the day. These things were sent to try us, and they certainly do!

[rlupus]

Hi to you all , i am in the same situation i am in a lot of pain with all my joints especially now the weather has changed i expect i will suffer right through till end of march i am on a very high dose of steroids as i have chronic obstructive airways disease and loads of other problems i am now on oral morph but it makes me very drowsy but i do get a little relief, take care i total understand how your feeling , we just have to keep up a hard fight against this dreaded illness, take care xx

[caninecrazy]

hi, I too have problems with my knees (and hips) my left being my worst. ive grinding and pain when walking upstairs. I take ibrophen when the pain gets too much. I try not to take meds as im a bit of a scaredy cat about side effects! lol. I strap my knees; it helps support the knee cap and keeps my knees toasty warm.

[Cma9905]

Hi, I know what you mean with your knees. I have to use a walking stick now. My rheumy done ct scan to check I didn't have no cartridge floating and it just showed wear and tear in my knee. Again I was told to lose weight. Easier said than done when u are on constant steroids. What she did suggest though is to sit in a chair with a slight weight on your ankle and raise your leg to build up the muscles around your knee. She also said this can move the knee cap over slightly to protect the wear and tear. It has helped my knees.

[LottaTee]

Oh dear. What a bunch we. I am also suffering very badly with my knee and am walking with a cane. The dr gave me guess what. Yep cocodamol which just making me constipated. My bloods were fine and the drs told me to wait to see my Rheumy on 24th. I am not overweight. Just turned 30.

I will say though I have written to pals service and pct complaining about the way pills are thrown at me. I'm sure I could open a pharmacy. Anyways best wishes and get well soon everyone. Hugs spoons and forks in case you run out of spoons.

[Lorelei in reply to LottaTee]

I love your reference to SPOONS! Can you please post the website that tells the story of the metaphor of the spoons so others can read it?

[sezzie]

Hi, I too suffer badly with knee pain, stiffness & swelling, my left being the worst. I am 38 and having to use a wheelchair when I go out which is very upsetting. I take slow release tramadol which I was very reluctant to take but I was in so much pain & debilitated. It doesn't totally eradicate the pain but helps a lot. I've been on it for 10 weeks now & recently tried dropping the evening 1& the horrendous pain returned so I'm staying on it until my flare of 5 months subsides. I hope this helps & wishing you well.

[LottaTee in reply to sezzie]

Feel better soon honey.

[sezzie in reply to LottaTee]

Thank you, I hope you too feel better soon. What an awful illness we all share!

[March2012]

Thanks for all the replys. Been back to drs today, bloods came back clear actually one of the best results I've had since being diagnosed :/ the docs haven't got a clue what's causing it, have completely ruled out anything to do with lupus. Been taken off co codamol and give paracetamol and ibuprofen to take instead, like I don't take enough tablets everyday as it is. Had a phone consultation with rheumy have to go into hospital next week for steroid injections and possibly scans depending on what they think when they check me over. Getting so fed up with resting and not being able to do things when I try, now been signed off work till next month so having to apply for dla/pip. Which is all I need when I've only just started the job! Why is it every time it appears that I'm almost normal something has to go wrong :(.

[permanentgrowingpain]

it should be called lupus extremest roller coaster

[Lorelei]

I have terrible pain in my knees, hips and hands. For eight years, I have been seeing a chronic pain management doctor who is actually an anesthesiology specialist. He has prescribed AVINZA for me which is time-released morphine sulfate. This is a "major big deal" in the US, to prescribe morphine to a patient who is walking around functioning, driving a car, etc. He is the only doctor in my city who will prescribe this medicine for me, and I am grateful that I found him every single day!

Of course there are side effects to taking morphine long term. But it is a tiny dose so the side effects are surprisingly manageable. There is a new drug called AMITIZA that has completely eliminated the constipation I used to have. It was developed especially to prevent constipation caused by narcotic pain medication. Another blessing!

The idea of taking micro doses of morphine for lupus pain is this: All of the side effects of morphine are REVERSIBLE. My only alternative to reduce the pain is to take prednisone all the time. The side effects of prednisone, as we all know, are very serious, accumulate over time and are IRREVERSIBLE.

I have to be very responsible about keeping my appointments with this doctor every three months, requesting my written prescriptions on time, taking the prescriptions to the pharmacy and showing my ID, never, ever running out of this medication or I could go into withdrawal. However, taking time-released morphine changed my life dramatically for the better! I can walk a mile and a half now. I've lost 45 pounds! I can walk without a cane again! I can walk my dogs! I can do my own housework! I can run errands for three hours straight! I couldn't do any of those things on a daily basis without this pain medication!

If any of you can find a physician who is willing to write prescriptions for AVINZA for you, I urge you to discuss the possibility with him thoroughly and to try it if you think it is right for you. Truly, it could change your quality of life SO MUCH for the better!

[LottaTee in reply to Lorelei]

butyoudontlooksick.com/wpre....

[Lorelei in reply to LottaTee]

Thank you so much for posting this link, LottaTee!

This is such a helpful metaphor for explaining to others what it is like to live with the limited energy that many lupus patients have.

[LottaTee in reply to Lorelei]

My pleasure

[DonnyJM in reply to LottaTee]

Thanks LT for this link. I had not heard of this but it really hits the mark. It is very hard to explain to a 'non Lupy' what it is like.

I watched my Mum with SLE for 40 years and still did not really get it until I had my first big flare.

[LottaTee in reply to DonnyJM]

hugs and spoons. Lol