March's Topic of the Month - Pain Management (We want to hear your tips and experiences)

[Paul_Howard]

Our 'Topic of the Month' discussion for March is going to be 'Pain Management'.

Between 90% and 95% of people who have SLE will have muscle and/or joint pain as part of their lupus. It can have a huge impact on your quality of life, and can also affect the lives of your family and those around you.

We want to hear if you have any tips for managing pain in lupus. Have you found that a lifestyle change has made a difference to your pain levels? Have you tried a complementary therapy that helped relieve your pain? Have you been referred to a pain clinic?

We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email [e-mail]

The article itself will be posted on the LUPUS UK Blog at lupusuk.org.uk/category/blog/

All submissions will be anonymised.

[Cas70]

Hi Paul - Becore I was diagnosed I used to rub Olbas Oil on my joints (or Deep Freeze Gel) and then take a co codamol tablet or two to get to sleep at night. Hydroxychloroquine helped the pain a lot but I am virtually pain free since I started a recommended dose of Turmeric daily. I haven't needed any painkillers. I was so pleased I went to a registered Medicinal Herbalist and he has put me on a herbal mix that completely rid me of pains , stopped my awful Sjogrens cough in its tracks, plus the awful gut side effects of Hydroxy. I ceased the Turmeric after my first visit to Medicinal Herbalist, but would recommend it for the pain as it is a natural anti inflammatory. If sufferers are not keen on the Turmeric then good old Olbas Oil really does ease the pain. I still have the hair loss, awful dry skin and sore eyes but to be free of pain is a gift. Hope this is of some help. Best wishes. Cas70

[Paul_Howard Partner LUPUS UK in reply to Cas70]

Thank you for sharing your tips Cas70 . It's great to hear that you've had such success in relieving pain this way. We would of course recommend that people check with their doctors before starting any herbal or complementary therapy so that they can be aware of any potential adverse effects on their lupus (or other conditions) and any possible interactions with other treatments.

[Cas70 in reply to Paul_Howard]

Sorry Paul i should have said that the Turmeric was suggested by my Autoimmune Consultant together with Vit D and B12. The Medicinal Herbalist is registered and Licenced and checked all my drugs before prescribing. He was recommended to me by a friend, a Doctor who has had Lupus for 12 years and has managed to lower her intake of Steroids since visiting the Clinic. My GP - (never get to see the same one) just shrugged and I was discharged by the Rheumy and Dermatologist back to a chaotic local Surgery who have no follow up procedure. I have to remind them when I need bloods etc. There is an amazing indifference to Lupus and all ailments like it - sad but true. We have this amazingly helpful website but are otherwise on our own to find relief from so many uncomfortable, debilitating symptoms. Best wishes

[sunshine16]

Hi Paul I have had severe back pain And had it for a long time I was eventually referred to a pain management consultant who did a spinal injection for me which has really eased imy pain and I only need one every six months it has helped me to reduce my medication

I also have acupuncture once a month which I find really helps

Wishing everyone healthy and happy days

[Paul_Howard Partner LUPUS UK in reply to sunshine16]

That's great. Thank you for sharing your experiences sunshine16 . Were you referred for acupuncture on the NHS or did you find your own practitioner?

[sunshine16]

I was referred by my g p on the n h s , then my physio went private so I have continued to see her on a private basis

[misty14]

Hi Paul

Here are my tips for dealing with pain. Hope something can be used for the blog. They've all helped me.

1) I go to a pain clinic as have severe pain from an injury as an extra!. You have to have been treated by your GP first before a referral to a pain clinic. They are good because they offer many different ways of treating pain, different painkillers than GP's can prescribe, injections, pain physio which is gentler and a pain management course. They also recommended this book ' pain management plan by dr Frances Cole which includes a relaxation CD and tips by sufferers themselves. You can get it on Amazon for about £3.

2) Distractions- listen to music, meditation/ relax cd, hobbies.

3)Be kind to yourself. This I learn't in pain support group!. Living with pain 24/7 is tough so plan weekly treats like seeing a friend for coffee. If more housebound a treat a day like listen to favourite music, or have favourite biscuit/ice cream.

4) Have a nap each day, helps you cope specially if sleep disturbed!.

5) Hot/cold pads can be helpful. Never put cold one directly on skin, always wrap in towel first!.

6) Always get medical advice if pain suddenly worsens or is in new place. Also it's a good idea to review your painkillers with your GP every 6 months to see what works and what doesn't. You can discuss changing them or also seeing if you can come off them as why take something if it's not benefitting you. Also you may not need them at same dose or at all. X

[Paul_Howard Partner LUPUS UK in reply to misty14]

Great tips misty14 , thank you for sharing them.

[misty14 in reply to Paul_Howard]

No problem Paul, glad to help .