@arcuri24
Namaste,
I’m sorry to hear you’re going through the process of eliminating autoimmunity. It’s frustrating waiting to find out and get a name for your condition.

I understand how frustrating it can be when the chronic pain remedies available aren’t adequate. I practice everything you mentioned, and they’re a part of our toolkit to help us manage and alleviate the pain and other symptoms. I’ve read some research on chronic pain, and unfortunately, there’s no cure, especially for neurophatic pain, which is on another level. The only management is to live and exist as comfortably as we can and you are doing that.

You sound like you’re doing everything you can to make your body more comfortable, and it’s normal to feel angry. Your body has changed, and that affects us emotionally, mentally, and psychologically.

If you’re ready and open to it, I would recommend counselling. I live in England, where we have free healthcare on the NHS, but I paid and went private to find the right counsellor for me. I worked with her for three years, and she helped me a lot. She supported me to discover what I needed to do to live and cope better, I’m going to have a check-in with her soon because my mental health has been struggling as my neurophatic pain has got worse over the past few months, and if I am honest to myself I have been struggling a bit, putting on a mask to the outside world as I don’t want to be treated differently. I am though as I now use a walking aid as the nerve and discs have caused drop foot and weakness to the left leg and I need the walking aid to move around. We use whatever tools at the moment we need them. It’s not a weakness it’s a sign of strength because we want to live!!

I have lumbosacral spondylosis with radiculopathy in my lumbar and cervical spines, fibromyalgia, and hyper-mobility. I had a root nerve block in my lumbar spine for five years, which reduced my pain tremendously. However, I had a bad reaction in 2022 and stopped having them. My pain increased, and my left leg swelled up, becoming hot and difficult to walk as the nerve pain became unbearable.

To manage my pain, I use massage, cupping, acupuncture, meditation, and breath work to refocus my mind away from it and calm myself. I also practice Gi Gong and Yin yoga, and I do a lot of Cat but not the Cow yoga movement when my L4, L5, and S1 go into meltdown. Seated exercise helps me strength my leg and core muscles and screaming into a pillow helps too! lol. Yes, exercise can get uncomfortable, but I understand the importance of keeping my muscles and bones strong to prevent further injury or sickness, so resting afterwards is vital.

I understand that sitting is uncomfortable, the pins and needles, numbness, burning sensations I get in my buttocks pelvis and hips as there is a network of nerves in the sacrum and when there is impingement its going to hurt. When the pain is bad I cry it out with breath work, meditation and relaxing music. Sometimes when I sleep I lay on my stomach with two pillows supporting my core and hips and torso and another pillow to rest my chin or lay my head by putting my arms underneath and lay my head on them. I sleep with four pillows to support my body when I sleep, so it’s using the stuff that makes you cosy and reduces your symptoms. I also have a bed frame handle to support me to get up out of bed when my pain overwhelmes me.

Change in hormones can trigger allergies, that’s what happened went through menopause early at 38 or 39, and now I can’t eat foods I love, such as fish, seafood, anything citrus, and have intolerances to eggs, spices, alcohol, gluten foods, and coffee. I might as well live off water!

I hope you find the solutions you need. Oh, and I forgot to mention that I sit on soft cushions on my sofa or in bed. I massage my lower spine with olive oil mixed with Epsom salts, and the magnesium relaxes my muscles. I also have an Epsom salt bath once a fortnight with essential oils, coconut oil, bay leaves, and cinnamon sticks. It’s my bath time treat, they say it has anti-inflammatory properties, even though there’s no scientific study to verify it. But for me, it helps.

Chronic pain can be a dark, lonely, and horrible place. But if you have help and support, grab it with both hands! Remember, you’re not alone because you’re here, just like me reaching out for support and having a safe space to get it.

Remember, what works for one person may not work for another, so it’s important to talk to your GP and physio to get as much information on the injections as you can. Then, make an informed choice.
Wishing you all the best!