I saw my neurologist at MGH on Thursday, she and her colleague have diagnosed my with both Sensory Peripheral Neuropathy and Central Pain Syndrome.
I knew I had peripheral neuropathy, and last Spring came to understand it was being caused by venlafaxine and chronic moderate serotonin toxicity and also possibly the long term consequences of having Lyme disease. It has continued to spread, and I now have this pain in about 75% of my body.
Central Pain Syndrome, apparently has been set in motion by either the toxicity or by the withdrawal, or for unknown reasons. From what I have found out about it, asking the docs, reading online, it is a damage to the brain that causes pain, hypersensitivity to arise out of the brain misperceiving sensation and creating pain signals. It appears that it is generally considered life-long and progressive.
I get pain from almost anything -- a ride in a car when the car hits potholes. An emotional experience. Stress. Activity. Anything that is stimulating basically. The pain accelerates over the course of the day and can become extremely intense. I've had pain all my life, and never in my imagination could conjure anything this bad, with the exception of pain from burns - which is definitely worse than this.
The pharmaceutical treatments (except for ketamine) are all off the table, and basically only "control" and "minimize" the pain.
I've been referred to the pain clinic, and to the Spaulding Hospital Dean Center for Tick Borne Illness rehabilitation.
There is some sort of treatment which involves intentionally experiencing pain, that is noxious but not damaging, and taking an approach of curiosity. And mirroring therapy. I need to learn more about these.
This is my price for taking venlafaxine for 10 years, and AD's for a total of 25 years.
Aside from the increased pain from the exertion of going to the doctor's visit, and the exhaustion, I am very depressed today and the entire thing has triggered increased autonomic dysregulation (withdrawal) of professed sweating, irritability, rage. Appetite ON. Appetite OFF. Sleeping more than being awake. Temperature up. Yet if I'm too hot and sweaty, the allodynia (pain from air movement) is still in play and perhaps even worse and I have to wrap my body in blankets to avoid searing pain.
Feeling quite hopeless and alone today. And emotional. And YET I must calm down and relax, or I'll have more pain.
Off to a disciplined day of sitting on the sofa and watching nature videos and taking more naps.
PS -- currently holding at 22.22 mg, been here for 3 weeks.
2002 to 2016 Venlafaxine ER 225mg. 2013 TMS treatments triggered nerve pain in face, arm, back. 2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex. April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding. OTHER DAILY PHARMACEUTICALS: *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily,
[DX 11/16 Felodopine 5mg since 2006, DX combivent 8/1/16]. *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain. PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS: *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma. 1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan, + others