Chronic Pain members - Welcome, please introduce yourself

Hello to everyone, My chronic pain is caused from Ehlers Danlos syndrome. I have had 15 surgeries since 2011. 8 spinal fusions, bilateral knee replacements, Achilles tendon repair, 2 eye surgeries as a result Vagus Nerve damage.
A recent reverse shoulder replacement left both arms, hands, with numb-pain.
I usually have a positive attitude. I certainly do try to. I am having a difficult time not being able to use my hands much without burning pain. I am still going through various testing. This has been ongoing for 4 months.
I have no one can talk to about this because my family gets too upset, which makes me more upset and nervous.
I am glad to listen to others who have chronic pain. Wishing everyone here peace.

Hello @hannahemmajane, Welcome to Connect. Thank you for joining us and sharing your health journey. What a journey it has been. Kudos to you for trying to keep a positive attitude even though its hard through challenges.

Thankfully you now have a place to seek support and shared experience here on Connect. It must be difficult not wanting to upset your family.

I'm sorry about your burning hands after 4 months. It sounds like neuropathy. I experienced burning hands from small fiber neuropathy which was diagnosed through a skin punch biopsy. What tests have been run so far?

I switched to a DO as my PCP this year, and it's made a world of difference. Wish I'd done it sooner.

Please don’t stop with your PCP if you’ve got chronic physical comorbidities. As an example I stayed away from my rehab DO since 2020 and presumed my low back, hip and leg was due to my long standing back issues. Turns out I’ve got bilateral hip osteoarthritis

Hi every one. My name is Darryl and I have cronic pain with my CRPS. It's been several month's since I've posted anything. I guess I have keeping bottled up insisde. My CRPS was diagnost about a year ago. I was all to a fall down numerous step's and shattered my elbow. The CRPS started from my left finger tip's up to my elbow. This past June it expanded up from elbow , all the way up to the left side of my face. This past weekend it continued to my right jaw.
Here is my biggest problem. Since July my weight has dropped from 175lbs, to , as of today 131lbs. All my doctor's keep telling me that I just need to start eating more. Even my stupid pain management said that to me last week. Needless to saying I'm meeting with a new pain management doctor January 9th. It seems like a lifetime away. I only eat something twice a day and even then I have to I have to weight until the pain subsides enough to quickly eat. Has anyone else had a problem with cronick pain that it effects your ability to eat?

Hi Darryl @drg24242, I just wanted to catch up and say hello while you wait for members to chime in. It's been a while since we chatted.

As long as there are no underlying serious health issues to be concerned with, weight loss can be a common symptom of chronic pain. As can loneliness and depression resulting in a lack of desire to prepare food or eat.

Dropping all that weight is not good. If I recall you live alone, correct? Does anyone check on you or help with food shopping or preparation? How about socialization? Do you feel you need more?

Hi Darryl, I don't know where you are located but here in Washington State I can recommend a craniopath DC who specializes in difficult pain cases and also Temporomandibular Joint pain which it sounds like you have. The pain in your jaw may be from your clenching in reaction to the other pain-you would need a doctors opinion but that would certainly affect your eating and weight. If you are interested in contact info let me know.

I have year long head and neck pain and now have shoulder freezing commonly called frozen shoulder.

Hi first of all thank's for responding to my post. I live in Pittsburgh Pa. buy do think that yesterday a found a good sounding support group that have a list of doctors that specialize in what I am suffering from. It's called CRPD. cronic regional pain syndrom. It's causes the nerves from my finger tips all the up to the side of my face to fell like there is electric , burning pain 24/7. For anyone else who suffers from this terrible condition the name of the place is called rsdsa. Supporting The CRPS Community. They are nation wide.Anyone with CRPS I would suggest that they look at their web site, Talk later. Darryl

I also saw Rachel's responce. I was so great to here from her. She was extremely helpful getting me through some real rough times. Unfortunately I'm back in the dark state of mind agian but I'll get through it. Thank's, Darryl