Thursday, March 11, 2010

Jump Aboard the Pain Train

Again, another month has past without posting. I appreciate everyone that checks back here. I apologize for the delay. February was a strange month for me mentally. I think I felt overwhelmed of course, tired of it all, and a little hopeless. Sounds so Emo as the kids say today. I really didn't have much else to post really. I was waiting to get in with the Pain Clinic and not much else had changed. This is good because since nothing much changed that means that I was actually doing pretty well physically. It has been a good month without infection. I finished all my tests with the Infectious Disease doctor. He basically eliminated any possibility that my conditions were being caused by an underlying infectious disease process. I am so grateful that I had such a wonderful experience with that doctor.
I did in fact visit the Pain Clinic clinic doctor yesterday. I had to fill out pages and pages of information from birth to date about 3 weeks prior to my first visit. They now have everything on me since birth. In scheduling the appointment they told me that it would be a 2 1/2 hr. appointment. I didn't believe that it would be that long or that involved, because history with most doctors has been they get you in and out and not much resolution to any problem. I am a bit pessimistic - I know. My appointment did in fact last until I was the last person in the clinic and lights out. I showed up at 2:45 as directed for a 3:00 appointment. I didn't get to my car until 5:30 pm. Dr. Morris was so thorough, honest, knowledgeable, caring, concerned, and definitive to my pain issues. He told me that most of my pain is due to the Fribromyalgia and not the Lupus. Other doctors have mentioned that my pain level was quite extreme for it to be just the Lupus. I told him that I had quite a few people to apologize to, because I didn't believe that Fibromyalgia was real. I just want to say to my readers that do have Fibromyalgia, I am eating crow for dinner tonight. I am so sorry that I have downplayed that diagnosis throughout my posts. I have been in so much constant, immobilizing, pain that I can take.
There was a stigma to me for going to a "Pain Clinic"...Methadone....NO WAY! I am not a heroin addict, etc. All of those thoughts filled my brain and again, I have been proven wrong. I was treated with great dignity and empathy and concern to help me get to a tolerable level of pain, so maybe I can live a better functioning life.
This is the plan:
1. Immediately add Neurontin (Gabapentin) at bedtime.
2. " " Cerefolin NAC (B12, Folate, and Acetylcysteine) tablet 3 x's day
3. " " Lidodern (Lidocain 5% Topical) 1 patch daily
4. " " Iron Supplement to help with restless legs & Fibromyalgia symptoms
5. " " Deplin & CerefolinNAC once a day
6. " " MagTabSR as a muscle relaxer (magnesium)
7. " " Capsaicin Cream (Sombra or Sore-No-More) 3 x's day
8. Keep up the Vitamin D Supplement at 50,000 units once weekly
9. For pain he has recommended that I consider long-acting opiods (buprenorphine, sustained release morphine, oxycodone, fentanyl patch, methadone, and others. I am to discuss with my primary physician after my husband and I do our research.
10. Physical Therapy for the Fibromyalgia.
11. Biofeedbak, CBT, relaxation strategies and other techniques by a pain psychologist.
12.I am avoiding medical marijuana and adding some daily exercise as tolerated. The goal is to get to 30-60 minutes per day total. OUCH!!!
13.I need to consider homeopathy because I am so sensitive to standard medications as is typical for people with Lupus.
In the future we will consider a Trial of IV Lidocaine Infusions & Savella/Milnacipran.
Maybe this post of my pain plan will help some of you that frequent this site as you follow my progress. This is a lot to take in for one day and again it is overwhelming. So much to do for one affliction. I have to balance these changes with my Lupus, Sjogren's, etc. Overall I am o.k. with the direction we are heading for my pain plan. I managed to get 8 full hours of sleep last night! I am groggy for most of the day, but I have to was soooo nice to rest without much pain last night. This gives me hope and some energy to try the treadmill today. I haven't felt like that in years. I am holding out hope that I can get a hold of this pain train. Thank you to my family for enduring this with me. I know that it takes a toll on all of you. I love you.


lupie said...

Feel better soon...
It is great that you have a good doctor who listens... :)


Anonymous said...

I was wondering if you have tried antibiotic treatment for lupus/CFS etc?
Here are some links:
Hope they help.