NEW TO THE SITE

[doddy1952]

Hi, I,M Dave and new to the site.

I was diagnosed with CRPS about 2 years ago, originally it effected just my left arm and leg, but now it has "migrated" to my right side, arm, leg and on bad days in my elbow, shoulder and upper back..

I never have a pain free day and my medication is at the highest level that I cane be given ie...... slow release morphine 20mg twice daily..gabapentin 200mg twice daily..in between this the only thing that my GP has advised me that I can take is paracetamol as it was found that the quick release morphine that I was on for some time was having an adverse effect on my lungs, twice I have been in hospital the past 2 months with Pnumonia.

Oh how I wish for a pain free day.....

[Barnclown]

Hello Dave & welcome

You're toughing out a lot of really hard stuff

My version of CRPS is in one of my forefeet, which is bad enough. But I also have erythromelalgia which shares attributes of CRPS + overlaps & combines with the CRPS affecting my hands, lower legs, feet, head.

Am wondering when you were diagnosed with lupus?

And how does your rheumatology or dermatology clinic feel about your GP's assertion that you cannot take other meds than morphine?

🍀🍀🍀🍀 coco

[Jbsnide in reply to Barnclown]

What is CRPS? What are the symptoms? I was diagnosed in 2011, lately I'm having terrible leg aches at night. Some sharp pain in my foot at night. I'm ok as long as I'm up and moving. Once I go to bed I ache terribly, some upper shoulder pain too! Thanks

[Barnclown in reply to Jbsnide]

Have a look at:

Restless Leg Syndrome (RLS)

nhs.uk/conditions/Restless-...

And

Complex Regional Pain Syndrome (CRPS)...several of us are managing this here...and there are more with it here on the HealthUnlocked Pain Concern Community forum.

nhs.uk/conditions/Complex-R...

There is also an excellent section on CRPS in this erythromelalgia doc:

rarediseases.org/rare-disea...

[Jbsnide in reply to Barnclown]

Thank you, I'll check this out, very helpful!😃

[TomWillingham]

I had peripheral neuropathy (CIDP) caused by lupus. I had taken Cymbalta for 27 years to help with the pain and depression caused by lupus. Went off it recently and had serotonin syndrome from withdrawal. I asked my psychiatrist for a script for low dose naltrexone starting at 2.5 mg. It's working. The doctor sent my script to a Compounding Pharmacy, as the low dose naltrexone is not available commercially here in the States.

My wife had/still has CRPS caused by rotator cuff surgery. She doesn't like meds, so suffers from it as well. I'm hoping she'll see my positive outcome from the low dose naltrexone and try it.