Pain relief ideas please.

[Jessileigh]

Pain relief ideas, please. I live in US and Dr wants me to stop taking hydrocodone. I just flared again. Back to 30mg pred. Every time I step down on pred, increased pain in legs and joints for a bit. Debilitating. Also hard to sleep because of pain. Baths help. Guided meditation. What meds or non meds are you using to get through the tough spots? Thanks!

[PMRpro]

What is your diagnosis?

[Jessileigh in reply to PMRpro]

IGA Vasculitis HSP with kidney involvement. Does that make sense?

[PMRpro in reply to Jessileigh]

Probably - but I'm sure it will make a difference for any suggestions.

Hope someone can help xx

[Jessileigh in reply to PMRpro]

Thank you!

[Christophene47 in reply to Jessileigh]

I have the same problem in NJ. I doubt that your doctor wants you to stop your pain medication. All doctors are being squeezed by drug law enforcement authorities to stop prescribing opiates. They fear coming under investigation for prescribing too much to too many patients and fear the risk of losing their licenses. This has happened to a number of doctors in NJ and I imagine other states.

You can look for a Pain Management Practice which can continue your medication if your medical records indicate objective reasons for pain; x-rays, scans; other tests. You can also look for a Suboxone certified doctor. If your state has a legal marijuana program, you could look into that. Very good for pain and inflammation.

In the meantime, I have found Lidocaine patches , OTC) helpful as well as Cannibus Oils (legal) called CBD oils which come in tinctures for under the tongue. or topical forms.

I sympathize with your situation; personally I think that government has no business in the doctor-patient relationship. And that is what is happening.

Best of luck to you...

[Suzym2u Moderator Vasculitis UK]

It sounds awful but it would inappropriate for any member in the group to recommend a pain killer of any kind. You really should be talking to your physician who you see for the Vasculitis.

[Jessileigh in reply to Suzym2u]

Ok. Just looking for any ideas. Doesnt have to be meds. The doctors can take care of that and there is always something more/better to do at home.

[Suzym2u Moderator Vasculitis UK in reply to Jessileigh]

I can look on NHS choices here in the UK and see what they suggest.. I will be back

[Suzym2u Moderator Vasculitis UK in reply to Jessileigh]

I found this link nhs.uk/live-well/healthy-bo...

[Jessileigh]

I am not looking for prescription ideas. Just other stuff you do or use over the counter. Legs up and getting enough sleep seem to be my best pain relief. Looking for other easy ideas. Not a med discussion.

[ZiggyDiego]

I have GPA & extensive osteoarthritis, so joint pain has been a particular problem. I've been having physiotherapy: initially I was given very specific graded exercises & ultrasound to address foot and ankle pain. This was brilliant. Now I'm doing pilates with a physiotherapy technician: I've done pilates a lot before I got ill, but having to relearn it. One thing that I've really had to learn to be aware of, is how pain causes tension throughout the body. So I'm practising relaxing tension in my jaw & shoulders, then moving very gently and smoothly, resting when I need to. It means I can go further! I also use a warm wheat bag and deep freeze gel for acute pain. The best thing about high dose steroids is being able to get in and out of the bath, I've just reduced to 10mg, so I'll have to give up on that again, but it was nice while it lasted! Hope you find ways that work for you.

[Jessileigh in reply to ZiggyDiego]

Thanks!

[Katie18]

Hi I’ve have Churg Strauss and nerve pain in my lower legs and feet particularly at night. I take a low dose 20mg of amitryptiline to help me sleep and numb the pain. I also have shiatsu massage or reflexology about once a month and used to have it more often when the pain was bad. I’ve had accupuncture in my lower limbs and feet from a Physio which helped. Swimming helps soothe my feet too and I do meditation. Hope you find something that helps

[Jessileigh in reply to Katie18]

Thanks!

[BronteM]

Another idea is to find an Alexander Technique practitioner. I see one every 4/5 weeks and get individual help on keeping everything moving as smoothly as possible. Her exercises are simple and practical and work for me -also she is a sympathetic ear who can pick up on things that I haven’t noticed or done anything about. Something that we don’t get here on the NHS!

[Jessileigh in reply to BronteM]

Thanks I will look that up. Like physical therapy?

[Hidden]

Hi I use reiki every day, earthing mat the same huge relief over time .

I was discharged from nhs care in January 2018 as I’m managing cerebral vasculitis myself .I was taken off Azathiprine 18 months prior because they suspected bladder cancer fortunately it wasn’t ! I had to tell the doctor 3 of them how I had got better they were genuinely interested !

I work voluntary for the nhs in palliative care it gobsmacks me what reiki does for patients!

If you haven’t tried it don’t knock it till you do !

It’s expensive to pay for it ,the best thing to do is learn it yourself and use daily .

Kind regards Diane

[Jessileigh in reply to Hidden]

Thank you! Wonderful ideas!

[Christophene47 in reply to Jessileigh]

Also, reiki- my daughter in law gave me a gift certificate for a reiki treatment; years ago I was going for regular massages from a certified therapist and an RN. She was also working to get reiki certification and asked if she could practice on me; I was skeptical, but must admit I felt an energy afterwards; a type of good heat. But you have to go regularly for it to last and using a certified therapist can be pricey. Also have heard good things about acupuncture for pain and healing.

[Mooka]

I have recently attended a pain management clinic and have been recommended to look at paintoolkit.org. I haven’t had time to look at the whole site yet but there seems to be plenty of links and videos on there to suit different aches and pains.

Good luck I hope you find something that helps x

[Jessileigh in reply to Mooka]

Thanks!