Earlier this week I could've drowned. For real. The sun and sky disappeared and I was tumbling in a washing machine of darkened water without knowing which was was up. After what felt like an eternity when I finally popped up, lungs bursting, I realized my feet were cut from the reef, my skeg cut my thigh and now I have several new bruises. However, I'm still here! The pain reminded me to be thankful for all the wonderful things in life..and days I don't get hurt.. I couldve been under another goshdarned minute and blacked out and not been here writing this today. Im lucky just to have a few scrapes, bumps and aches.
When it comes to the RA- the pain is constant, Im on painkillers all the time. I can't live without ibuprofen, need to take the edge off. Sometimes I do feel irritated but try to distract myself with music, exercise, reading, last resort- stronger pills and sleep- just being honest here.
I saw something beautiful this week- a pair of Hawaiian monk seals on the beach. They're endangered, about 1200 left. Most people have never seen them in the wild. I feel privileged have enjoyed their company and wanted to share them with you (my new avatar).
when my wife was having "severe" back pain, she was prescribed "durogesic" patches.
these are slow release pain meds, each patch lasts for 3 days.
this is acceptable for temporary relief. her docters let her stay on these for a couple of months only.
she was not allowed to stay on them permanently.
people do not understand perminant pain.......
government departments are set up to stop addiction, but not to help pain sufferers.
As a Canadian, and one who lives in Vancouver, I seem to be living in a part of the world that is open to alternative medicine.
With the chronic cluster migraines, the body pain and nausea I experience, T3's, morphine, Advil and regular Tylenol have gone from being marginally effective to effective at upsetting my stomach.
I have looked for alternate methods of pain control. The usual massage, acupuncture, accupressure, yoga and the like. Another migraine friend of mine told me her doctor recommended she try eating TLC (medical marijuana) or using a tincture and found she had excellent results without the awful side effects from the big narcotics. I was really hesitant to try this, even though it is legal with a prescription here, but after watching a few documentaries on the subject I spoke to one of my DR's. He agreed it was a good idea and that I was an excellent candidate. I have to say that using small amounts of THC in food has changed my pain management regiment forever. My muscles are relaxed and my pain feels like it lives more on the front step than in my house. My GFR has come up 20 points in the last two months since I began. Certainly this is not a cure all, but it might be worth looking investigation for those who are in areas where they have the option.
I apologize if this ruffles any feathers, my intention is only to share my own experiences.
Hope each of you reading this are well and pain free today
As long as the topic stays on pain management and not fixing or curing lupus with these unapproved methods this post is fine. If, at any time, this thread goes over the line and begins to give alternative cures for Lupus this thread will be locked. Please make sure to read all the stickies (at the top of each section) about what is, and isn't, allowed in WHL.
This has been a great read, but also a sad one. The reality of needing long term pain relief and what that involves...is something I never thought I would have to face myself. My sister (who suffers similar but perhaps heightened symptoms I do) has been on such strong medications for years that she has been treated as nothing but a pathetic drug abuser. That is the reality! Does anyone offer LONG term solutions? NO. Short term yes possibly, but then things should just magically "fix" it seems!
I am on Endep, a slow release daily medication to reduce nerve compression/ inflammation. It was originally prescibed for those with depression...so I was very reluctant to use it thinking "i'm fine!" but it has helped SO much. I suffer incredible pain due to compressed nerves and migraines. I thought was all fine but now i'm on endep OMG the difference...I just can't describe! I take medication for break through pain maybe a couple of times a week...not every DAY like it used to be. I have had to up the dosage a couple of times...and still play with it trying to bring it down every now and then (I have a bit of a thing about taking drugs due to a family member with a serious drug addiction...so I dont handle taking daily medications easily)....but think i'm finally accepting this is one of the drugs i'm just going to have to take daily. it's been I think 3yrs now since I first started it. Off i'm a complete mess, on I cant function, if not normally.
I hope you can fine some balance and that maybe this is of help, though I know each drug works differently for different people
just thought I should add given the post above...i'm not suggesting in any way the drug I have been prescribed would help or cure Lupus! It has helped me deal with some of my issues with pain only...legally here within Australia...and by no means does it provide any more. Wish it did though...who wouldn't :)
There are two people in my MS support group who use the legal prescription grade medical marijuanna (THC) for neuropathic pain, and they say it works wonders. If my own pain from peripheral neuropathy stopped responding to the meds I am currently on, I would not hesitate to ask my Neurologist about getting a prescription for MM.
Also, if MM works on nerve pain from MS, it's a distinct possibility that it could also help with nerve pain caused by CNS Lupus, as the pain mechanism is nearly identical for both. It's something to consider talking to your rheumo/neuro about if needed.
No need to add that! We understood. I just wanted to put that in before there was an issue. We all want to know things that people have tried that have helped the pain! Curing is very different than "dealing with" and that is what you were talking about
Originally Posted by ~CJ~
Not an option for me. It is still illegal here. It seems if they are going to allow narcotics for pain management that MM should be allowed as well. *shrugs* but who am I
Originally Posted by rob
I totally hear you. Not only do I use MM as part of my pain management regiment but I am also on a slew of other meds including Cymbalta, Trazadone, Wellbutrin, Topamax, and various inhalers. Much of this may change as my diagnosis is in the process of being dialed in. At this point, even though I have some relief my functionality is very low.
Truly my heart goes out to you sincerely. I find that it is easy for me to get into a "Hurry up and Wait" mentality. What will the next drug do, the next test show, the next doc say. Sometimes it helps me to stop for a moment and pat myself on the back, be grateful for tenacity.
So today i will be grateful for the tenacity of us all ~
Hugs and encouragement
Originally Posted by ~CJ~