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My story πŸ˜ͺ

Jun 19, 2015 4:30 AM

I haven't yet had a diagnosis...had 2 spinal surgery's for spinal stenosis. Dr. thought that was causing my pain but NO!! It's been 3 hrs of pain and 1 yr. since my last surgery.
I've had cortisone shots, L2 block, still pain. I've had a EMG, mylogram, so many MRI's, my spine. Pelvic, Hip and groin. Seen orthopedic, neorlogist, spinal dr's. To no avail.
I have been to 2 Boston hospitals and now I am going to Mass. General Boston on Tuesday to see yet another specialist. I want to know what is wrong!!! I'm very frustrated. Why can't anyone figure out what is wrong. I can't sleep, I wake up with night sweats. This is the most I've written about my situation. I will not get into what this has done to my personal life. I have none. No one really gets it!! I'm sure you all know what I mean.
Thank you for taking the time to read this. I was hoping to find someone who also has the same pain as me. I need help!!
My pain is right lower back, groin, hip area with pain that shoots down to my knee. Only right side. Pain gets so bad I can't walk!! Lately I've had numbness on inside of thigh and calf area.

Jun 19, 2015 6:10 AM

Sorry to hear you're going through so much pain. I pray that God grants healing upon you & that God provides the doctors wisdom to be able to find the issue. I know this has to be frustrating because I've been having headaches, but yet to have anyone give me a resolution, but I refuse to lose faith & don't you lose it either.

Jun 19, 2015 9:23 AM

Maitai48, I'm very sorry you have pain that no one has been able to find the cause of. I truly understand your frustration, because I began to complain of bowel issues, pelvic, groin, low back and leg (esp inner thighs) pain in 2008. It hurt to stand, walk, squat, sit, lay down and even drive. It was in 2010 when a Gyn doc found a 10 cm mass in my pelvis. I had 5 surgeries in one to remove the mass and correct the damage caused by it. I still suffer from it. I continued with pain and a colon specialist ordered an MRI with dye, which found engorged pelvic veins (pelvic congestion syndrome), so I had more surgery for that. Had my doc not ordered the use of dye the PCS wouldn't have been found. Unfortunately for me, even though some treatments brought a good deal of relief, the damage done has had life-altering effects and long term consequences with continued pain.

Your description of pain only vaguely sounds like mine, so it's not likely the same cause. But, did your doc use dye in the MRI? There are many things that can't show up without dye use.

I will be praying for you, that a doctor will find the cause, and that you'll be able to get great relief! πŸ™πŸŒΌ

Jun 19, 2015 10:38 AM

Thank you, Resse and flabbysLady. I know some people have a lot more to deal with than me. Still nice to have a place to come and not be judged.

Jun 19, 2015 11:06 AM

Maitai48, I'm sorry for your pain and lack of diagnosis. It took many years for the docs to even believe I had a problem!! My neuro exams, MRI's, ct scans, etc. all kept coming back normal. I get the no personal life thing, I have none either. Sometimes don't even attend parties at my own house because of the pain!! I haven't even been in a relationship in over 20 years because of it. Forget about sex too, not interested and too much pain involved. I hope they find the solution to your pain and soon!! Best of luck, you'll be in my prayers. πŸ˜ŠπŸŒΊπŸ™πŸ»

Jun 19, 2015 5:27 PM

I wish I was able to offer a diagnosis. I wouldn't dare. I can assure you though, that you are in a community of caring people. We do understand something of what your going through. Many of us, myself included have unseen illnesses. I have fibromyalgia and share some of the same symptoms. I am not suggesting that is the cause of your suffering though. I pray that you may find the correct diagnosis soon.

Jun 19, 2015 7:24 PM

Maitai48, Your pain is no less painful than mine of anyone else's. Trust me! We're all different with causes, symptoms, pain tolerance etc. My long description above was to show you how you have to press forward with doctor after doctor, until someone finds the cause of yours. Armed with knowledge you are your best advocate. As hard as it gets keep pressing for answers. (((Hugs))) & prayers! πŸ™πŸŒΌ

Jun 19, 2015 8:49 PM

I'm sorry you haven't yet recieved a diagnosis, that's always tough.
I can't say it's for sure anything, but did it start after an injury/surgery? I'm biased, but you could ask your doctor's if it might be CRPS(complex regional pain syndrome)/RSD(reflex sympathetic dystrophy)/causalgia.
Is your leg swollen, and have you had pins and needles before/during the numbness?

Jun 19, 2015 11:23 PM

Maitai48 welcome to the chronic pain family. I hope that the Dr's you are going to see will be able to tell you something. Will be praying for you.

Jun 20, 2015 6:35 AM

Thank you everyone for your input. Much appreciated 😍

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