Ive heard so many things about how going the holistic route could be just as beneficial as the western way. Ive even heard some things about how lupus is just really a extremly high deficiency of vitamins in your body and/or extreme food allergies. Im at my wits end with this disease right now. Im in so much pain and the doctors keep prescribing me medicine that doesnt work because its not strong enough or I feel like they think its in my head and all i want is pain medicine. Its going on ten years now and its only getting worse. Ive also read up things about people who smoke marijuana or use the hemp oil to help with the pain and to ease some of the other symptoms. Its very controversial but ive also seen other diseases get helped by the marijuana as well. Any in put???
CeCi,
You have a right NOT to be in pain. If you go into any hospital you will see this posted right on their walls.
That said, YOU need to decide what is right for you. I don't know that there is any one right tx as everyone experiences this disease differently. Many, if not most of us, use both traditional and holistic medicines as well as watching our diets.
Any article that you pick up will state that as of this moment there is NO definitive cause of of Lupus although many advances have been made including as you pointed out links to allergies, diets, nutrients, etc.
I would suggest having your Rheumy refer you to a local pain management specialists. A rheumy that doesn't believe you about your pain should NOT be treating you for anything. Also, if you can find a pain mngt doc with the open-mindedness to treat the whole person, i.e. (meds, exercise, meditation, etc) I think you will be able to find some relief.
Before your visit, notate all of your days symptoms, including pain and stress and any meds that you are taking for them.
Prepared and knowledgable let the docs know that you are aware of your body and are willing to be proactive in your care.
Please keep us up to date on your progress.
XOXO,
DeAnne
DeAnne, CeCi,
I'm going through the a similar situation. The docs have always prescibed my pain meds. I'm on my third rheumy in a year (retired, quit and new one now)/ I find myself in a different position, now that I'm asking for medicine. She gave me tramadol--joke?! My rheumy is dodging my liver problems by no acetomenophen and no NSAIDs when the liver spedcialist said that I can have up to 3 gm acetomenophen per day.
They're putting me in a postion of just doing my own thing with OTCs (just acetomenophen -not NSAIDs which I agree with). Aceto actually helps when I take them around the clock. Rheumy doesn't want me to have opiates either because I might get addicted. I asked both my primary and my rheumy to refer me to the pain clinic. I just got hems and haws and a lot of throat clearing.
There is a patient services that I will contact if this continues to be so confusing.
This rattles me and the only way I know to deal with it is some assertiveness. If any one has more suggestions, I sure could use some advice.
I'm all for holistic medicine. Like DeAnne said, I would definitely look into a pain management team/doctor. I would also do some research and see if there are any alternative or integrative health centers near you. I know Maryland has one and it offers acupuncture, aromatherapy, herbal medicines, nutritional counseling, etc. I haven't met with them yet, but that's what my tax refund will be for. lol. I'm early in my research about holistic medicine for lupus, but as I go along and gather more info, I plan to put it in a blog on here for those who are wanting to go the holistic route. Praying you find some relief!
USAGURL,
It is very unusual for people with actual chronic pain to become addicted. Ask them for a referral and state that if the Pain Management doc is the one prescribing, they are not on the hook if you "were" to become addicted. Find info on opiate addiction to take with you so that you are well-armed with information.
Right now your body is under a tremendous amount of stress from chronic pain. It elevates your blood pressure, causes headaches, decreases appetite and basically pulls you into a depression that can be avoided.
There are some good alternative medications but they can become quite expensive. Many prescription meds have NO aceto or NSAID's and tell your doc that you don't have any choice as they will not refer you to someone that can help. Pain management looks at the whole person...it's no longer about just giving drugs.
Again, do research on what you would like to have, i.e. full nights sleep, quality of life, more movement.
I know this isn't much help, but perhaps find out who the docs are in your area that specialize in pain management and holistic management and call them to find out what they require for a referral. Especially, if they know you have Lupus.
Best of luck,
DeAnne
USAGURL said:
DeAnne, CeCi,
I'm going through the a similar situation. The docs have always prescibed my pain meds. I'm on my third rheumy in a year (retired, quit and new one now)/ I find myself in a different position, now that I'm asking for medicine. She gave me tramadol--joke?! My rheumy is dodging my liver problems by no acetomenophen and no NSAIDs when the liver spedcialist said that I can have up to 3 gm acetomenophen per day.
They're putting me in a postion of just doing my own thing with OTCs (just acetomenophen -not NSAIDs which I agree with). Aceto actually helps when I take them around the clock. Rheumy doesn't want me to have opiates either because I might get addicted. I asked both my primary and my rheumy to refer me to the pain clinic. I just got hems and haws and a lot of throat clearing.
There is a patient services that I will contact if this continues to be so confusing.
This rattles me and the only way I know to deal with it is some assertiveness. If any one has more suggestions, I sure could use some advice.
CeCi,
On of the next page is an article that Ben posted on the differences of pain on the sexes. I found the both informative, but also something that should be shared with your docs. Perhaps it will make them understand that what is "normal" is not necessarily "normal". I know that I have entirely different reactions to different meds that others have.
Please read it and I hope that it provides go info to you.
DeAnne