Chronic Pain members - Welcome, please introduce yourself

Hi! My name is Vicki and my husband suffers from severe chronic pain that limits his activity a great deal. He was an athlete in his youth and younger adult life, so to be forced into a sedentary existence is very hard on him. (His pain is only partially caused by his past athletic endeavors.) We are retired, and this is not the retirement we worked and saved and planned for.

I am hoping to find understanding and perhaps do some networking on this group.

Hello! I'm 58, diagnosed with fibro with a significant fatigue component in 2022, after a year suffering with no answers. Just having the diagnosis was a relief and helped improve my mood. I am currently on Cymbalta, Lyrica, low dose naltrexone, amitryptiline, and thyroid meds. I tolerate all well and my pain was well controlled until recently. I have adjusted my thyroid meds, added some CBD and take flexeril at night but I'm still achy. I think at the root of my issues is lack of high quality sleep. Nothing I take or do takes me to restorative sleep. I am still working and need to do so for the next few years, and that weighs heavy on my mind. Glad to be here and hope you all are having a good day today.

Hello,
Sandra here. I was diagnosed with fibromyalgia in 2021 following a weird virus ( not COVID). My lumbar spine is fused from arthritis which seems to aggravate the surrounding muscles. One thing my PT performed recently was dry-needle of the lumbar spine, and it significantly reduced pain!!
I take 900 mg. Gabapentin and 60 mg Cymbalta. It all helps.
The virus also left me with burning mouth syndrome. I also avoid gluten.
I’ve learned acceptance and speaking truth and absolutely the need for discussions with my doctors and PT.
Thank you for sharing your experiences and ideas!

Hey there @kathleenega, welcome to Connect. I'm glad you're here, too! Sorry to hear about your health struggles. Nothing worse than not being able to catch a restful nights sleep to be able to help restore the brain and body, especially if you still work. I've been where you are and it is really difficult. Retraining the brain into a new sleep pattern takes time, but with repetition and building new or different sleep habits, it can be possible.

One aspect which helped me was to begin developing a structured bedtime routine so my mind and body got used to consistency. Good sleep hygiene habits like omitting certain foods and drink by a certain time, reducing blue light from devices or TV 1 -2 hours before bed, reading a light hearted book or doing a mindless puzzle, taking a hot bath no more 2-3 hours before bed to allow for body temp to cool down, keep stress reduced by not watching the news or talking to stressful people before bed, have a cool, comfortable, dark sleep space, trying white noise like nature sounds or a fan... I could go on, but don't want to bore you!

In what ways, if any, have you tried to apply change to your routine or bedtime habits?

Have you tried a good soaking bath before bedtime? If you have a jacuzzi style bathtub, that's even better. I know what you mean about knowing what the problem is. Some people swear by Tumeric that you get at the health store. Do you think you have any food allergies? All the Best.

Sorry for the suffering you're enduring. I've had two spinal decompression surgeries - a drop in the bucket.

I have CIDP, with burning pain in my feet and ankles and have tried more medications than I can remember. You and @kathleenega have more than your share.

Amitriptyline helped my facial pain, and it seems to have cleared up. In 2017 I had a spinal cord stimulator implant for the neuropathy, and it was wonderful!! 80% relief! For the first year. From there it slowly lost its effectiveness and after 4 years, it was and continues to be hard to tell if it's helping at all. But I leave it turned on for whatever relief it does give.

Kathleen, have you had a sleep study? I had one years ago and when I got my CPAP machine I averaged 12+ hours of sleep per day the first month. I was very much sleep deprived. I've always used a full face mask, over my nose and mouth, because I've been a mouth breather all my life - that is until I had a deviated septum corrected. All of a sudden I could breathe through my nose. What a difference! But I still breathe through my mouth at night, so a nasal cushion is useless. I'm usually claustrophobic, and thought there was no way I'd be able to tolerate the mask, but I surprised myself. I guess my need for sleep trumped claustrophobia.

It seems that I've heard that spinal cord stimulators sometimes treats fibromyalgia. Maybe I'm remembering incorrectly. Lyrica was the first medication that actually helped my pain, but I ended up in the hospital with a reaction to it. Bummer.

My siblings have had multiple back surgeries and except for the decompressions, I seem to have dodged the family bullet. The decompressions were a direct result of a fall that caused compression fractures in the same areas.

So many medical conditions need research breakthroughs. And the day may come when it's our turn.

Jim