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Unknown inflammatory disorder

Mar 04, 2017 5:32 PM

Hi there,
I am Stef and have been dealing with pain now for 10 years, January. I am,a,married mother of two boys 12 and 10 and fell ill throughout my second pregnancy.
The new RA specialist has asked me to keep a journal and that's how I found this app/site.
I have wide spread pain in My joints as well as stomach pains (I think "this is it", every time i have an attack)
I also suffer of neutropenia, anemia, splenomelagy, ibs and I get skin rashes over my hands and at times over my whole body. Noone knows what this is? Sciatica and bursitis as well as carpel tunnel is also there. If anyone has similar issues do let me know! We have to be our advocates sometimes. I do take long and short acting hydromorphine again ( amongst other strong meds ) now that the injectable methotrexate and prednisone has been discontinued. We There are a few drs that think I may have EDS, Does anyone know about eds? Thanks for your support, Stef

Mar 04, 2017 6:22 PM

I have been diagnosed with many disorders that have shared symptoms that you have ID. Beginning with coeliac disorder, autoimmune disorder, rheumatoid arthritis, and Fibromyalgia. I have done special super nutritious drinks, vitamins, acupuncture, chiropractic trxt, pain medicine except Lyrica and Cymbalta due to side-effects. You may want to monitor your diet on top of the episodes or flareups. Sometimes the weather patterns also influence the high-levels of pain. I'm getting follow-up testing this week to see what my statuses with regards to my digestive system and hoping to have new information. I have been accused of having Crohn's disease but that was ruled out. I've attempted yoga/ water aerobics and even tried a personal trainer to discover my flare ups impacted my ability to drive or get to my car without pacing the short distant walk. The biggest surprise of it all was that I got diagnosed 6 years ago while being vegetarian. Please keep hope alive and know that there are other alternatives out there that have not been approved by FDA.

Mar 04, 2017 7:04 PM

I have had spinal, joint issues since i was teen, ( 47 now ), i was told everything from growing pains to it was all in my head. Over the years I've had several surgeries on my spine and my joints. I've been diagnosed with fibromyalgia,DDD, and several other spinal issues over the years. However i was always told by physical therapists and pain specialists that it had to be something more. Well last year i went to see my neurosurgeon for what i thought was gonna be another spine surgery, he ended up referring me to a neurologist specialist. At Christmas time I was diagnosed with MS. I guess what I'm trying to say is don't give up, it took about thirty years in my case but when u find the right doctors, u will get the right answers you've been searching for.

Mar 04, 2017 7:11 PM

True. Mustard Seed Faith is what I lean on as we play guinea pigs 🐷 to fight our way through truth. MS was ruled out, but with a new insurance plan, which ends fairly soon I too hope for a new discovery or option to allow me to last a little longer because it isn't getting any easier out there and I'm the same age as you until next month 🤖

Mar 04, 2017 9:53 PM

I was diagnosed with hEDS (hyper-mobility Ehlers-Danlos Syndrome) three years ago. I have had shoulder dislocations regularly since I was an infant. I have sprained my knees and ankles so many times that I finally quit going to the ER when they happen. I spained my knee and shoulder a few weeks ago by walking across the floor. I had a heart attack at 36. I have asthma. I have bursitis in my hips and shoulders. Bone on bone osteoarthritis in both knees. My thumbs sublux every time I move them. I have herniated discs in my back and possibly my neck (insurance denied an MRI to find out why my neck has started locking and snapping). Reynolds phominon (sp?) My knees, elbows, fingers alll bend in the wrong direction. I am legally blind without my glasses. Even with glasses, my right eye has 20/30 vision. The second worst knee injury I ever had was from putting cinnamon rolls in the oven.

I could go on all night, but I won't. :-) I'm 46 as of a week and a half ago. I feel like 96 most days.

EDS effects collagen, our bodies are made up of 80% collagen. It can affect the digestive system, causing our bodies to not digest foods. My allergy list gets longer every year.

You may also want to look into Mast cell activation. Having trouble concentrating tonight, maybe I'll remember to log in, in the am when I can tink better.

Mar 05, 2017 9:48 PM

Thank you everyone so much. I am mush blessed, in the sense that I live in Canada and health care here is more or less free. Many tests have been done. I too have had stomach surgeries, ob surgeries and joint surgeries. Around 13 in the last years. It is tiring. Pain to day was manageable at around 6/7. Fatigue was not! 10/10 slept more then I was up. :( I don't like these days. Hopeful tomorrow will be better. Thank you everyone for you kind words. Will update you once I know more x

Mar 06, 2017 3:47 AM

One thing I'm learning and fast is the more natural the remedy the better the result
Lavender oil I'm never without it's the only thing that's clear up my raised ugly very itchy and dry rashes and also easies my headaches
Stay away from wheat and non natural sugars for a couple of weeks and see if takes away any of the pains and problems
Good luck and feel well :)

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