How do others live with there chronic pain.

You need to find a better doctor who will give you something to make your quality of life alot better than what youre doing now. Are you allergic to all nsaids? Im allergic to Ibuprofen but can take Aleve and aspirin.  

I have been living with Lupus for about 15 yrs, now, and I can tell you that you need to get a doctor that is thoroughly informed about this vexing condition (rheumatologists are the best choice, but you need a very well informed one).  Stay out of the sun as much as possible.  Don't eat potato or tomato peelings among other items, and educate yourself on what works  best for you.  This isn't an easy road and you need to have a team of doctors to help you.  At some point, you will probably have to go see a pain management specialist, too.  Find people who are supportive and will listen to you and respond positively to you.  You have enough to deal with, without trying to fight ill-informed people who will lead you down the easy road because they don't know the answers to the hard questions.  There is also a Lupus list on the internet and several books that can help you get informed.  Educate yourself and be your own best advocate.  God Bless.

Lynn in TX

Hi, I have been diagnosed with lupus for about 8 years now and can thoroughly sympathize with your pain dilemma. I, too, could hardly move on most days. Then, my rheumatologist recommended I see a pain management specialist. What a relief! He has given me trigger-point injections where it hurt most, prescribed a heavy duty pain patch named Duragesic (fentanyl), gave me lyrica (for my diabetic neuropathy), percocet has been a life-saver, and Robaxin for muscle spasms has also been helpful. Most days, I am almost pain free now. I am able to embark in a light exercise plan to lose much unneeded weight. Sure, its alot of medicine, but my quality of life is a thousand percent better than before. Hope this helps.  Diana

I am doing injections, most of my pain is across my ribcage, I use Lidoderm patches and am having steriod injections in my spine (because all nerves come from your spinal column) it took a few times for them to find the right place etc but now they are helping me.  I also take percaset tylenol has acidaphedamin and so does percaset i dont know why you could not take this.

Good luck and Gods blessing, keep doctoring until you get something that works for you.

Living with Chronic Pain is a very difficult thing but you must find ways to work with it if you are ever going to be able to live a life worth living. I have Ehlers-Danlos Syndrome (EDS) which lists "chronic and severe neuro-muscular pain" as one of its primary symptoms. And, unfortunately, due to a bout with paralytic polio back in the 1952 epidemic, I am now also experiencing the muscle spasm with severe pain in my legs and back that come with Post Polio Syndrome (PPS) as well.

 

First of all, you need to find a Pain Clinic with Physicians who are specializing in Pain Management. This was one of the best decisions I ever made. The Physicians at the Pain Clinic I go to are not afraid to write prescriptions for morphine and/or for hydrocodone or other medications that work! And they do this as long as I don't abuse the medications and as long as I try to use any other pain management techniques as I have access to them.

 

Currently I visit a massage therapist once/week. Muscle tension can add remarkably to any kind of pain.A good massage therapist can help you learn to relax your muscles even in the face of pain. I have a lot of pain in my hands. Years ago my son gave me a parafin wax "machine". I had no idea then just how much I would come to love that machine. After several dips in the parafin, building one layer after anotherof hot wax, I found it was capable of "sucking" the pain out of my hands for a surprising length of time. I find soaking in a hot tub can bring some relief too(In fact that is where I am headed when I sign off here!)

 

But most of all, I had to make some heavy decisions. I had no real control over either the Ehlers or the PPS. But I did have control over how I faced the world and faced my pain. I can still think and I can still feel. I needed to set some goals for myself for the remainder of my life; To decide how I could make the most of the strengths I still had and also allow for the gradual deterioration I faced in my future.

 

I applied for and was granted, on my first application, Social Security total and permanent disability. (HINT:I think I got it on my 1st application because of the SIX doctors who wrote  SS Disability Benefits in terms of monthly deletters supporting my application.) But those monthly deposits in my bank account and access to Medicare did allay some of my fears.

 

Because my vision was fairly rapidly deteriorating (EDS) and I was having frequent surgeries (had # 15 a few weeks ago and already have 3 more lined up for scheduling) I moved into an Independent Living Community where my meals were served in the dining room, they came to vacuum my apt. and clean my bathroom 1/week and provided transportation to Dr.s appts and there was always something going on somewhere- exercise classes, bridge clubs, craft, field trips,etc. I found over time that I had also acquired, in my fellow residents, a very supportive "family"! Now I try to focus on what I still can do, play the piano, and plant flowers, and maintain friendships with others, some with problems similar or even more severe than my own.

 

I also have been seeing a psychiatrist for several years now. I think I would have gone totally psychotic at times if I did not have her there to back me up. So now you know how I do it. I don't know how you  will decide to map out your life. I just know that you will have to be the one to do it, not your disorder and not your pain. It will be up to you. There are others who can help you if you seek them out- Pain Clinics, Supportive Living Situations, Support Groups, Individualk Therapists,they are all there for you. Just remember, you are capable of being MORE than just your PAIN. You will need to do it on a day by day basis. And do let me know how you do, OK?

Sandy

It takes a multidisciplined approach and medication is just one part. I can write a lifetime of wisdom but it's out there if you search online. At age 27 you have your whole life ahead of you while you can make the choices. You also have the right to seek out help and fire those Doctors who trivialize your pain. The pain and anxiety must be met with a healthy determination that will not undermine your life. yAt age 27 you must deveope healthy habits and by all means do not become a couch potatoe or let your health deteriorate (overweight). I am 48 and my pain started in 1979. While I could have done a few things differently, pain management was not a big thing back in the 1980's. Still the resources were out there and I did not use them. I paid the price and even well my I had a spouse who in herself was troubled and had her own problems, including an abusive alcoholic father that died when she was 16 years old, divorce was just a matter of time. In 2006 after 20 years of mariage she divorced me and got custody of my 14 year old only child. Now they livess 1000 miles away, but I do Text my son everyday. I also talk to family often While I loath divorce I have learned a lot from mine and the wisdom that comes from such profound events is most valuable. My attitudes of life and what makes lasting relationships have become apparent and I am even friends with the ex-wife. Still that good atitude and likeability should have come when I was 27. Back then I should have acpeted it and lived life to its fullest potential. Go out and make friends, develope healthy relationships, smile and put your best foot forward because feeling sorry for oneself is a mindset that will turn others away. Do not allow your pain to take control and create unhealthy habits, but instead create lasting friendships that are cherished. Simply, behave in a manner that sends out a positive karma or else others you meet will enter and exit your life.

Hi, I was diagnosed with lupus over 11 years ago. I cannot believe they are treating you with over the counter pain medication. My lupus did some scary horrible things such as having a half of gallon of fluid removed from the lining of my heart. The procedure used to remove the excess fluid is called a pericardial window. I was in intensive care for about 3 days afterwards but made it thru the storm and realized God kept me around for a reason as most people die from pericardial effusions. My second scare came after waking up one morning unable to bear any pressure on my right knee. It was extremely painful. My doctor at the time prescribed a MRI test which revealed a torn menicus. Not having insurance at the time and unable to have surgery. I have lived with the pain for 5 years now. I finally saw a Orthopedist specialist who told me repairing the menicus at my age was useless and recommended knee replacement for both knees.

I have a wonderful Rheumatologist who treats all my lupus complications from my pain, the swelling and removal of fluid from my knees and achy joints. I get cortisone shots in the both knees about every 3 months unless the inflammation causes too much fluid which causes unbearable pain where I have to see my doctor before 3 months comes around again. I take Hydrocodone for my pain and it helps.

 

Ask your doctor to give you a prescription medication such as Hydrocodone which should will help with your pain. If he doesn't want to do it, then as to be referred to a Rheumatologist. Rheumatologist specializes in Lupus.

 

Good luck and please take care of yourself. Lupus is a serious disease.