Pain management

What suggestions do people have for pain management? I have tried chiropratic intervention, massage therapy, cortizone shots and nerve blocks, accupuncture, heat and cold pacs but still have an unbelievable amount of pain. I cannot do a quarter of what i used to do and my sleep is constantly interrupted. . My doctor is hesitant to give pain killers but i have been so miserable i cannot imagine living with this everyday for the rest of my life. Also recently had an issue with motrin and clotting so i am not sure what else to try. I have only been diagnosed for a year but have had symptoms for a while. . Thanks!

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  • Yes, the wretched pain. Having had lupus for 18 years I too have been battling with the joint and muscle pain. The only things that have helped on the medication side is taking an appropriate dose of prednisolone but keeping this as low as possible (about 7.5 mg) but this is not really good in the long term because of the side effects. More recently, I have been on an imuno-supressant drug called mycophenolate mofetil. After about 4 months it seemed to kick in because I have had hardly any pain at all. I'm now reducing the prednisolone very slowly.

    The other thing that can bring on pain or exacerbate it for me is stress. I have now learnt to pace myself more and not compare what I used to do with what I can do now. Those days are gone and I have had to accept it and its OK. Exercise is said to help pain too but you need to find the exercise that suits you.

    Meditation and relaxation help and recently I have become aware that Mindfulness meditation is good for chronic pain. I have never been referred for pain management so cannot comment on that and have not fancied it myself because I don't like taking pain killers and when I have they didn't seem very effective.

    A good night's sleep can work wonders, but so many of us have disturbed night's sleep so its important to get help with that too.

    Good luck with finding a solution! I hope that you will soon get rid of the ghastly lupus pain

  • Hi tinanyc, I sympathise with you, I had pain in my joints since the age of 19, I was diagnoised with lupus at 33. For years I took pain killers, but it got so bad last year that I couldn't move. I am on prednisolone as well. 5mg, it has taken the swelling off my joints and relieved the pain, I still get it though, like jude, I stay away from stress, I recently left a stressful job, it was making my physical pain worse, I also use heat patches on my joints, the heat is soothing, try herbal teas to keep you calm, honestly its not all about the drugs, its a lifestyle, you adapt your life to stay healthy, stay happy, its so important to be happy and calm in mind. I promise it will get better. X

  • Hi

    Can sympathise with you regarding pain and have been trying to find a way of getting relief without taking to many pain killers - though I have had to submit sometimes. The fear in the back of my mind is that what happens when the one you are on does'nt help any more and then you have to step up to the next level.

    Was actually at my first pain clinic appointment last week. I was very very sceptical but the guy took time to explain how 'outside things' can help. I have now agreed to see a pain aneathatist (did'nt know there was such a person) to see about the meds. I am on and see if he can help organise and help with anything pain wise. (it appears I am on a few tablets to counteract the effects of other meds. - if you see what I mean). Also seeing if I am a suitable candidate for a tens. machine for my back (question about my epilepsy - which has been caused by cerebral lupus!). Heat and long soaks in the bath I find helps and I know it sounds totally stupid but I find I am in more pain if my feet arfe cold!!!!!!!!!!!!!!!!

    Take care - Irene x

  • Heat pads are a wonderful thing to help and I also use a Tens machine. It gives a small electric shock into the nerve endings which help to numb the pain. Sounds awful but it's really quite relaxing as they have different settings - you can have constant pulsing or vibrating, whichever suits you and they also have controls for higher levels of pain. I hope this helps. x

  • On heat, if you can get a bed heater, that might help your body. Put it on low and sleep with it, though the timer doesn't last for very long I believe and chilly mornings are the worst now! A nice warm/hot bath with epsom salts helps too!

    As for pain management, my method is unconventional and not widely available or legal in the UK. (I smoke/vape/eat medical marijuana.) It's a great pain management for me since the plan "confuses" and "distracts" the pain elsewhere, but this solution is not always looked on in good light, especially for those who are uneducated.

    Changing your lifestyle will help immensely as well. Eating right, exercising/walking around while you can, smiling everyday, being positive, etc. I have tried all of the above things that you have tried as well and it has not worked very well either, so I feel your pain.

    All the best.

  • i have tried everything on the list above but the heat is really hard for me to take... since sle i run 20 degrees hotter than everyone else. i believe that stress might be a trigger because i find more pain during stressfull times. i also believe the medical marjuana is a great alternative but it is still illegal in nyc. . though up for vote soon. thanks for all the ideas but i think i need to relax more and get over the stress. . thanks all!!

  • I also seem to run hotter as a result of my Lupus. As for pain, I got myself referred to the Pain Clinic by my Lupus specialist. One of the best things I did, they have a whole host of things that they can try on you until they find something that works.

    Get yourself referred and see what they can do for you.

    Good Luck !

  • I have gone to two already but they seem to know nothing about lupus. They gave me really painful spine injections that worked for about a week and then it came back. i do get tempoary relief from a chiropractor but was looking for more permanent solution. i am coming to understand that this is going to be an ongoing battle. Thanks for all the suggestions!! I will try them all and see what works best for me!

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