Help pain

Don't know how to go on, I've had rhematoid for over a year now, I'm stating biologic on Tuesday, I've had 5 steroid injection since no luck with mtx and suppla was no go side effect weren't great my go isn't great, I'm in awful pain stiffness fatigue no real sleep in ages, I'm currently on nothing and of work due to flare ups I feel horrible weepy depressed, my gp will not give me anythink more than cocodamol which doesn't work, I've booked a appointment for tomorrow, I've had said to me and I quote " I'm not giving you any drugs" how do I go about asking for something stronger, I feel like I'm been put down for asking for pain relief, I can't go on, I can barley move I'm getting worst as time goes by I'm suffering bad.

13 Replies

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  • Hello vonnie, What a horrible situation to be in. Are you in the UK? Because your GP SHOULD refer you to a reumatologist. GP's can't prescribe the strong meds you need for RA. Although you have said you are to start a biologic soon. Do you know which? Sometimes it takes trial and error until you find a regime that suits you. Could you try Ibuprufen gel to rub on your painful areas? You can buy it from the supermarket (don't take tablets). Also, try not to rely on steroids too much. I know they work, but large amounts can cause Osteoporosis. If you visit the Arthritis Action wesite (https://www.arthritisaction.org.uk/living-with-arthritis/resource-centre/factsheets/) There are lots of factsheets to download, which you might find useful. Two other websites you might find helpful, NRAS.org.uk and arthritiscare.org.uk You could also try arthritisresearchuk.org All the best.

  • Hi poem , I've got naproxen cocodamol plus lanzoperole naproxen give me stomachs pain catch 22 I've rubbed deep heat in too I'm in pain a lot, nothing is touching the pain a bath helps I've just had a hot bath but now it's back I start this Tuesday entrecept im under the rhem team in the uk . Any ideas poem?

  • Try the arthritis Action page, there is a leaflet on ther specifically about pain management. I've never used Naproxen or co-codamol for RA. Lanzoprazole is to protect your stomach, and won't do anything for your pain. Hopefully when you start Etanercept after few weeks, it might start easing your pain. The following is from Arthritis Research.

    "Etanercept (trade name: Enbrel) is a type of drug known as anti-TNF. In rheumatoid arthritis and some other inflammatory conditions, too much of a protein called TNF (tumour necrosis factor) is produced in the body, causing inflammation, pain and damage to the bones and joints. Anti-TNF drugs such as etanercept block the action of TNF and so reduce this inflammation.

    Etanercept isn't a painkiller, but can modify the disease and should start to improve your symptoms over a period of 2–12 weeks.

    Etanercept can be prescribed by a consultant rheumatologist for:

    rheumatoid arthritis

    psoriatic arthritis

    ankylosing spondylitis

    juvenile idiopathic arthritis (JIA).

    There are national and local guidelines that determine when it can be prescribed, and these vary according to which condition you have. It's usually given along with other disease-modifying drugs – for example, methotrexate or sulfasalazine.

    Before starting etanercept you'll have a chest x-ray and tests to check if you've ever been exposed to tuberculosis (TB). You may need treatment for latent (asymptomatic) TB before starting etanercept. You'll also be checked for previous hepatitis infection, as etanerceot may increase the risk of hepatitis being reactivated.

    You may have further blood tests while you're on etanercept to monitor its effects.

    Are there any reasons I won't be prescribed etanercept?

    Etanercept won't be started if:

    your arthritis isn't active

    you have an infection

    you haven't tried other treatments appropriate for your condition first.

    Your doctor may decide not to prescribe etanercept if you've had:

    repeated or serious infections

    multiple sclerosis (MS)

    cancer

    a serious heart condition

    lung fibrosis (scarring of the lung tissue)."

  • Thanks poem I've read about it it's just this pain is unmerciful right now, can I ask to see the consultant on Tuesday to get some pain relief ? Agony

  • certainly, you can ask either your consultant or the reumy nurses at the clinic. Hope all goes well Vonnie. xxx

  • Thankyou

  • How did you get on today Vonnie?

  • Hi poem my gp wasn't great really, she went on and on saying it's the disease getting worst so if it getting worst why can't she help, I just feel like they don't care basically or is it because they don't want it coming out of there budget? I'm at a loss why why my gp are so adamant about giving me pain relief? Any clue poem beside the obvious addiction, like I even care about that with this pain why should I suffer? , she gave in and gave me dihrocodiene for 1 week, she says my consultant needs to prescribe it, so I was at clinic nurse said ring consultants secretary. I'm waiting for her to get back to me, I'm actually in worst pain today , I seen my them nurse on Tuesday she offered me another steroid injection I refused it what's the point it doesn't work, plus it's horrible side effects also had my teaching session on benepali, waiting for it to be send out so hopefully a couple of weeks for the rep to come to my house and I get started, nurse reckons it should sort me out, Jim preying it will, I've got terrible stiffness, itchy, burning hands and feet, it's just a nightmare sorry poem for going on moaning I hope your ok ?

  • Hi vonnie. Just read about your condition. It sounds like u have pain like me, I have psoriatic arthritis in my shoulders,arms, swollen wrists, hands are painful. Iam on enbrel biological have been on it for 2 weeks am waiting for the magic 12 weeks to c if it works?? This is the 3rd biological injection I have tried. Iam also on methotrexate. If I get really painful & stiff I take paracetamol & ibuprofen. This helps abit. There r a few biological's u can try. Hope your specialist can help u.

  • I don't know the full details of your situation but I know quite a lot patients have problems getting their medicines sorted out. My drugs are RA - Leflunomide, Osteoporosis - Zolendronic Acid Infusions, Vasculitis - Methotrexate and Rituximab and Prednisolone. I have Metrifen patches, Oromorph and Paracetamol for the pain of spinal fractures. I hate using Morphine, and would love to come off them. I hope you can start your treatment soon, and that it works.

  • Hi poem hope your ok on this wet Saturday morning ,God that's a lot of drug therapy Your on does it work for you? ... my gp prescribed me dihicodiene which helps a tiny bit, that's all I'm on one gp said to me nothing works pain relief wise, I think she as no clue what we it's like to be in pain every single day she says only the benepali will give me relief here is hoping,I'm waiting to start benepali seen the nurse on the 24th of may she said my benepali will be delivered 2weeks from that date. It's nearly been that, who delivers it poem ? Do they ring you with a date ? Then a nurse from the company a week later will be out for training, I'm in hell suffering when does it ever end? Will it ever end? I feel like my live as changed so much from been a normal active girl to feeling like I'm disabled and I'm not been dramatic that's how I feel, my life been robbed by this god awful disease, sorry, my complaint seem a bit much it's just so annoying and frustrating .

  • Thanks Vonnie. I was crying with pain early on (hip and all down my leg, knee and foot) but it has eased off a bit, except for my lower back. My drugs work OK, except for damp days. I have my annual mammogram on Thursday. I think its my last annual one, not sure.

  • Hi poem my benepali been delivered Thursday , how did your appointment go? I hope all is well? My flare up is horrible the worst it's ever been tired stiff and pain what a nightmare, hopefully my new mess will do the trick I've all my hopes pinned on this been a magic drug here is hoping. I actually work on a heam and rhem ward now I know for myself how much people suffer, I'm of work at the min hoping to go back in 4 weeks, alls been well, so I will know exactly what there going through, anyway I hope your keeping well.

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