WHAT?!!!! CRPS or complex regional pain syndrome.
I have had an unbelievably tough road health wise over the past 6 years … I remember thinking in September 2015 that I was the healthiest I had ever been. Physically, mentally and emotionally.
Fast forward to 28th December 2015 and the following has happened to me: Left frozen shoulder, leading to an undiagnosed burst appendix. One month stay in hospital with major life saving midline abdominal surgery, peritonitis, sepsis, subphrenic abscess, further infections, intensive care x 3 days, drips and drains etc. A basal cell carcinoma on my face which was surgically removed. A triple positive breast cancer diagnosis. Right frozen shoulder. Dupuytren’s Contracture in both hands. Dental surgery that was so painful I had to halt proceedings with a bruised jaw and stitches as a result. Hand surgery in March 2022 which has now resulted in extremely painful CRPS.
I didn’t even know that CRPS was a thing, but trust me it is. I have just joined the UK CRPS Facebook group to gain some insight into this. It is so painful, I can’t bear to even touch my fingers a lot of the time. Tingling fire like feelings all over the hand. My hand is swelling daily, and my fingers are losing their bendability (if that is a word!). Typing causes cramping and pain up my hand and wrist. Weekly visits to the physio department at the hospital now form my new life regime with me trying to find ways of helping my hand. I have ordered a TENS machine, a small vibrator (not one of those!) with different heads to massage the extensive scar tissue as a result of my body dumping too much healing to the hand operation. I wear compression gloves with copper, silicone patches under a splint at night to try and keep my fingers straight after the operation to correct the Dupuytren’s. I have painful devices to put on my finger during the day to keep it straight, I have a glove with Velcro on the finger tips to use alternatively to help bend my stiff painful fingers.
The pregabalin I am prescribed is adding weight to my body and making me feel rather sluggish and mentally and physically exhausted. Maybe it is the pain that is making me tired as is it non stop, and actually worse through the night as the nerves decided to kick off and run up and down my fingers!
I am thinking of ditching the pregabalin next week and try the Gerson pain triad of aspirin, vitamin C powder and niacin – I will report on my findings. I am hoping that this may help with the swelling too as the niacin helps to dilate the blood vessels, so may help the circulation in my fingers to help remove the swelling and fluid. I know that I will have to take it slowly to come off the pregabalin as the withdrawal symptoms are not pleasant – I am always amazed at the side effects of taking prescription medication, you aren’t normally told of them until you try and change them or come off them! I remember just stopping my medication after the appendix as I no longer needed it – I couldn’t work out what was wrong with me, I literally felt like a basket case. On discussion with my GP, she said ‘Oh you can’t just stop them, we will write out a weekly schedule to wean you off them’.
This is not a poor me post, just a this is my reality post. I am an outward going person, love life and always look for the positive in all things. Some days that is tough, but you have to keep going and showing up. There are, of course, down days when I just want to stay in bed, but I also care for my mum who has Alzheimer’s and is 88, we live together with my two sons, daughter-in-law and baby on the way. My family are my saving grace, emotional support and help for my mum too. It works having nearly 4 generations in one household!
There may be some of you reading this that have physical and emotional struggles on a daily basis that the world doesn’t know about – I am always here to listen and if like me, you are always searching for new ways to heal, then please let me know! I am open to anything and everything.
Take care and live life with a smile whenever you can. Much love Jane x