Connect
What do you do when you chronic pain flares- up and overwhelms you?
What do you do when you chronic pain flares- up and overwhelms you?
Do you just rely on pain medication or do you use gentle movement or exercise, mindfulness, talk with friends, TENS machine, massage, acupuncture, cupping, or soemthing else?
How do you keep your muscles strong and joints flexible, when your body is screaming in so much pain? Do you work through it, or does your body shut down to protect you because it's too much?
I have lumbar sacral spondylosis wiht radiaculopathy, cervical radiaculopathy, fibromyalgia and hyper mobility. So it's a combination of very painful neurophatic and neuroplastic pain, with muscle spasms, brain fog, IBS, and a range of other symptoms.
Iast night my coccyx -( tailbone) buttocks, hips and pelvis experienced so much deep burning and numbing pain, wiht pins and needles which radiated down my legs I passed out my body couldn't process that amount of pain. Also I was getting the same symptoms in my neck so that caused my shoulder, neck and head to wipe me out to.
When I woke up at 3.50am this morning I did very gentle stretches. Even now my muscles feel like they are bleeding, they feel cold, and the pins and needles aren't as intense as last night because I couldn't move to get my pregablin and I live alone. And I've tried training my cat, and she just tries to open my, meds and take them herself (joke) .. meow..ha ha....
It's a battle, but I don't let it beat me, I'm doing everything I can to stay mobile via gentle exercsie and currently having hyrdo therapy with a physio. I've had acupunture on the NHS, I do Yin yoga and Qigong to keep my body healthy- yes it hurts but I'd rather have a fit body with strong muscles to help support my skeletal frame and keep trim so they can't balme it on me being over weight as I weigh nine stone and I'm 5,6.
I'm curious to know what other people's coping stratergies are because I read so many people's stories on here who just want to give up and die. And I get it, I had those moments in the early stages of my diagnosis, when I didn't understand what was happening to my body. I read up on my condition to undertsand it and support myself. But with the support of two brilliant woman psychologists, who supported me and helped me get my mindset to a healthy and balanced place, and still check in with her once a month when I need that support and want to cry or scream.
Big love to eveyone on here living through such horrible pain! XX
Like
Helpful
HugInterested in more discussions like this? Go to the Chronic Pain Support Group.
Connect
@rockon79 That about sums it up in a nutshell. It's like when you go to any of the assorted doctors that we go through and they ask you your pain level right now.... "on a scale of one to ten.. ten being the worse pain you've ever felt".. I'm like, 'really'? 'Twenty"! "it was thirty this morning and about 50 last night".. I know they are only doing their job and they ask everyone that question, but still. I'm like 'look 10 does not do my pain justice', 'right now my foot feels like it's caught in a bear trap and someone is hitting it with a sledgehammer, and I'm trying to keep a straight face and not scream out while I'm having a conversation with you'. And I swear half my doctors probably think I'm faking it, and I'm probably sure I am not the only one that gets that feeling.
-
Like -
Helpful -
Hug
4 Reactions@insanepain My first neurologist did the usual tests with safety pins, needles, and electricity, and then told me that I didn't have nerve damage in my feet. I ended up having to see 3 more neurologists before it seemed like they actually believed me. I even tried a podiatrist, but he couldn't offer me any kind of help.
I saw my 4th doctor a few times over the course of 3 years before finally getting a diagnosis of idiopathic poly neuropathy, after performing every test out there only to tell me that everything looked "normal".
He basically told me that there wasn't anything else that he could do for me, and then he promptly retired.
-
Like -
Helpful -
Hug
1 ReactionFirst of all, it sounds like you have made some amazing strides in dealing with your pain. I have painful osteoarthritis and recently was diagnosed with osteoporosis after I fractured a vertabra. I exercise regularly but switched from my beloved Zumba and also yoga (could no longer do weight-bearing on my wrists) to Tai Chi and Pilates (using reformer). But I also meditate regularly and in subscribing to Sam Harris' "Waking UP" I came across a series by Vidyamala Burch, called "Pain without Suffering", which i found remarkably useful and helps me "head shift" when my pain is bad. In thinking about how to respond to your inquiry, I looked her up directly and she has a website (https://www.vidyamala-burch.com) which seems to have abundant resources you might find useful. Since I had only listened to her talks I was surprised by her appearance as a beautiful glowing woman, coping with chronic pain. I wish you the same on your journey and humbly hope this suggestion might offer some help.
-
Like -
Helpful -
Hug
1 Reaction@mrmacabre That sucks and sounds ALL too familar. I'm so tired of jumping through hoops for nothing, as I know all of you are as well. All the doctors, all the testing (not to mention, none of them are located in the same location, but THAT is another story), all for nothing 'conclusive' or 'everything looks normal'. They wanted me to have the EMG/NCV, okay done. Must have been my 3rd one in five years, no biggie. Neurologist said 'don't bother with a follow-up because there's nothing I can do for you'. Okay, fine. Ortho wanted me to have an ultrasound on both legs for comparison, with inconclusive results. Of course.. should have know lol. Pain Management gave me a Sympathetic Nerve Block, which of course did not do anything. I was beyond frustrated at that one. Not to mention all those co-pays for nothing in return. Through all of this I keep a positive attitude and try to joke about things.
-
Like -
Helpful -
Hug
2 Reactions@bpcnc2 I'm new to these groups, so I neglected to add that this is in reply to calmmylife57 @calmmylife57
-
Like -
Helpful -
Hug
1 ReactionLove the cat joke! I have had spinal degeneration up spine, surgeries, etc. The main PT is that I hurt fr several things and have tried several treatments without pain stopping yet. Right now I am determined to not give up but before days over I may prefer to try sleep which doesn't come easy or for long. The only thing that truly helps and prevents me from giving up is my faith. I'm not gonna preach but if God wasn't packing me I wouldn't be here. I live by self and cats which give hugs when they usually recognize my need. This will change but I need a support group. God bless us all.
-
Like -
Helpful -
Hug
3 ReactionsReally thankful for this group. Mostly because it is validating. Chronic pain is NOT made up and we all hate the meds and always question if there’s something else I can do. Long story short: I’ve tried more than I can list and spent thousands. Used to be able to treat things with moderate home remedies or actions but now I’m a position where I have to accept Rx meds for the rest of my life and pray for dr’s who are compassionate and ,most of all, trusting, to help. My pain has evolved from simple neck spasm headaches (tractions helps ALOT), to the late effects of post sinus cancer surgeries, radiation, and TBI. When scared I’m being blamed for my pain instead of trying to avoid or treat the it, can be emotionally overloading. God is in control!!!
-
Like -
Helpful -
Hug
4 ReactionsI have experienced those words, that want to blame me or doubt me about my pain. I have to take care to not allow them to get in my head. Thank God for God and loving supportive people. I am grateful that I am not alone even when I sometimes feel that way. I send you hugs and support, too. Sorry for what u go thru but thanks for sharing.
-
Like -
Helpful -
Hug
3 Reactions@debelli What cat joke? I must have missed it.
-
Like -
Helpful -
Hug
1 Reaction@ponygirlnd I’m so glad you are in this space to be immersed and wrapped up in support!
Your pain is real. With the late effects of sinus cancer surgeries, radiation, and a TBI, your symptoms are directly linked to what your body has endured. If anyone is making you feel like this is your fault, that is prejudice, gaslighting, and medical gaslighting. Let me tell you... IT IS NOT YOUR FAULT!
It is completely natural to feel scared. When fear takes over, stress levels rise, pain and symptoms heighten, and spasm headaches become agitated, as health professionals, they should know this.
I hope you find positive outcomes for your care and health. Take it one day at a time, and seek out the health professionals who truly listen and offer realistic information, resources, and genuine care.
Is it possible to get a second opinion, or take someone with you to your appointments who can help advocate for you?
Check out this links for support if you haven't already:
https://biausa.org/find-bia
https://www.brainline.org/
https://www.loveyourbrain.com/
https://www.mindyourbrainfoundation.org/
For military personal and veterans:
https://health.mil/Military-Health-Topics/Centers-of-Excellence/Traumatic-Brain-Injury-Center-of-Excellence
Take care :))