hello, im a new member

I would love some advice from anyone on how to cope with daily pain please, firstly a little about me;

I was diagnosed with S.L.E. (lupus) in 2005 after falling very poorly after the sudden death of my twin in 2004. I have daily pain in my joints which is caused by lupus. each day I get pain in new places! my main problems are my knees,mainly my left I have it strapped up during the day as my knee caps slips easily and the grinding sensation when walking. ive had an xray but was told my knee bones are good.

I accept that lupus is the cause and take ibrophen daily to take the edge off so I can cope with daily life, I walk everywhere as I don't drive and own a dog so I try to keep my weight down. its just having pain day in day out throughout my body out has gotten me down, how else can I help myself please?

im reluctant to take stronger meds as I don't like the side effects and I cannot afford prescriptions (I don't qualify for free) fatigue is another big symptom of lupus so having the energy and strength everyday is a struggle. sorry ive rambled on and on, any ideas and advice would be gratefully received ,thankyou x

4 Replies

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  • Hello BOB here

    Sorry to here you suffer from Systemic Lupis I think I understand a little of your condition. I have psoriatic Arthritis and have to take many of the medications you take.

    When you say you are having to skimp on medications because of cost, some people are exempt from charges that can be a great help. Could you manage to purchase a prepayment certificate, you can get them yearly or I think quarterly. With your condition you would soon get your money back. Many of the medications including -TNF and Biologics cam be quite effective in controlling your condition., although the contra indications Can be a little unpleasant, some of the treatments would be injections and could be either undertaken in hospital, home or GP surgery

    What medications do you take now, as you will need a script quite regular.

    This site is very good for support when someone is in pain,members are always here to give support.

    All the best

    BOB

  • Hello caninecraxy - Pat here,

    I am a huge supporter of the Chronic Pain Clinic and the wonderful help and support they can ofer.

    Get a referral though your GP and go with an open mind. You will be given the opportunity to explain your wories about side effects of certin drugs. CP can be treated in so many ways and it isn't always about swallowing packet after packet of opiates.

    It is about pain management. We all take paon differently and it s about livin with you own pain at a level which, hopefully, still aloows you to have some normality in your life. Pacing yourself to keep flair ups in the cupbard. Cocktails of drugs, injections, accupuncture or whatever might work for you. Thre is no quick fix and somethimes it can take some months to get you on an even ish level.

    I take it you don't live up here in scotland where we don't pay presciptions charges? A huge bonus for so many.

    Sometimes you have to take another drug to counteract the effects of the main drug. Life is a bugger!

    Good luck and as Bob says - we are all here to help each other.

    Pat x

  • I wish that I could offer a definitive solution.

    Rave rant roar this is the place to vent. A place to tell it how it is.

    Top tip is: don't overdo things however tempting. Tiredness lowers the resilence and everything seems so much unbearable.

    If you never got to grips with pacing yourself and spending your energy wisely, now is the time to learn. This has been hard for me to accept. Sometimes I do sometimes I don't.

    Keep on trucking and don't let the bugger git ya.

    X

  • hi there,

    a type of self acupuncture can help depending on how bad the pain is, if you pinch the skin between your thumb and finger until it causes a little pain can induce endorphin's to be released which are a natural pain killer and can lower the pain from other areas you have to keep pinching and releasing the skin and it will keep up the release of the endorphin's, also (and i am not trying to be crude) having sex or self masturbation can also do the same but with a higher action which is good for when you cannot get to sleep due to the pain both of these methods have worked in the for me in the past.

    good luck with the pain management for the future.

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