Connect
I don't know what I have, but it's painful!
16+ physicians (most of them at Mayo Clinic - Rochester), 20+ conditions/ailments/diseases ruled out and countless therapies, procedures, injections and you name it have been tried. I'm disappointed to say the least. I grew up going to Mayo Clinic Rochester my whole life. I now live about 3.5 hours away out of state. I grew up thinking and up until recently still thought that Mayo Clinic was the place you go when where you've been doesn't have the answers. I've heard, "Sorry I can't help." more than I can count. The doctor's I've seen have ruled out their specialty problem and closed my case - not referring me elsewhere, not helping me think outside the box and certainly not following up to see how I'm doing. I literally am looking for a doctor who is a replica of Dr. House from the hit show...'House'. In 2007 I had cystic fibrous dysplasia in my left femur. Successfully removed & repairs by Dr. Shives. Dr. Sems inserted a nail for healing and stability. Typical recovery and rehab from that surgery. Fast forward 2013, pain begins in my knee during my regular running exercise. I was seen in 2013 by Dr. Cross who removed a broken distal screw previously holding my nail in place - failed attempt to remedy my knee pain. 2013-2014 saw a slow but steady increase in my knee pain from just daily walking with additional pain into my left interior thigh and groin. 2014 had a meniscus tear repair by Dr. Nwakama at SW MN Orthopedics. This again was an attempt to remedy my knee pain - fail. 2014-2016 increased intensity and frequency of pain with the solidification of a clear and unwavering pain path from left groin to behind left knee cap. You could take a string, tie it in my groin and tie it behind my knee cap and pluck it like a guitar - that is my pain path. 2016 due to my extensive history with Mayo Clinic, my WI primary care physician sent me back. Dr. Sutka, finding "nothing wrong" referred for intense physical therapy - stressing that I should find a physical therapist willing to be aggressive and think outside the box. January 2016 - July 2016 weekly physical therapy. This did not yield positive results as my pain was so intense that the majority of exercises could not be completed. Physical Therapy approaches tried: routine PT exercises for specified areas of pain, dry needling, meditation, ultra sound, massage therapy and mirror therapy. Seeing no results, my PT recommended I see a Pain Specialist. Sept. 2016 I had SI Joint Injection. Oct 2016 S Nerve Block Lumbar injection. Both no help. Dec. 14, 2016 Dr. Mangold and Dr. Sems (Mayo Clinic) found nothing wrong with the nail inserted almost 10 years prior and said they couldn't help. Dec. 15, 2016 Ortho consults with Dr. Kollitz and Dr. Mabry. Their thought was possible dysplasia of the hip and referred me to Dr. Trousdale who said any hint of dysplasia he was seeing on my x-ray was no cause for concern and said he could not help. Jan 6, 2017 left hip injection with Dr. Duck - no help. Jan 6, 2017 Pain consult with Dr. Pittelkow, requested i follow up with Dr. Mary Gutierrez. Feb 3, 2017 follow up with Dr. Gutierrez, recommended trial nerve block of left knee for possible ablation. March 21, 2017 left knee nerve block by Dr. Michael Carl of Neuroscience Group in Neenah, WI. No help. March 2017-June 2017 several attempts to contact Dr. Gutierrez's office to follow up on neuromodulation which was another recommendation of hers - to this day i have not had a response. February 2018 pain is at a constant 2 out of 10 with 7 out of 10 by noon through the night. I haven't taken one step with my left leg without pain in YEARS. I need help. I need an advocate at Mayo Clinic and a doctor who is willing to explore any and everything for an answer. I'm 29 years old and the thought of "pain management" (which has been 100% unsuccessful) is just not an option. ANY and ALL suggestions/advise welcome!!!!
Like
Helpful
HugInterested in more discussions like this? Go to the Chronic Pain Support Group.
Connect
@gailb I meant to say how long will you get relief from 1bottle?
@lioness
Each bottle has 2 servings/doses. I found relief for my anxiety by drinking 1/2 bottle. But I used the second half within about 3 or 4 hours. You will have to experiment and find out what it will take for you. See how you do with 1/2 the bottle first time. You should notice an effect within 20 minutes or so. If you don't notice an effect after an hour or so, then try more of the bottle. The feeling is very calming. Please let me know how things go.
Gail
Volunteer Mentor
-
Like -
Helpful -
Hug
3 ReactionsI know what I have… 12 years ago rheumatology confirmed that I have degenerative joint disease, progressive osteoarthritis and fibromyalgia.
Six years ago was diagnosed with lymphoma after the surgeons removed a cancerous tumor from my sacrum.
I am cancer free now, but I have permanent nerve damage from the chemotherapy.
Pain management is 24 hours a day for me (live on small doses of oxycodone during my waking hours)
but feel it’s better to keep moving
than end up in a wheelchair permanently. I’m 69 but feel like I am 95 when I don’t take my pain pills. I take a lot of supplements twice a day, but I keep on Truckin on.
-
Like -
Helpful -
Hug
5 Reactionsdo you get side effect from the oxycodone wendy? I'm sorry to hear about all you are dealing with. God bless you and I pray you will improve miraculously. bon
-
Like -
Helpful -
Hug
1 ReactionWe have to keep moving,I’m in the same position.had a fusion from L2-5 some years ago,now SI joints don’t work,so left me having a hard time walking and balance issues.had to had surgery or Dr said I would be in a wheel chair.it gave me more years walking,just getting harder.Move it or Lose it is what I’ve been told.take care.
-
Like -
Helpful -
Hug
2 ReactionsMy sympathies to you for your troubles. I know what it feels like to be in pain a lot of the time.
Have you ever taken a round of fluorquinolone antibiotics?
I quit a prescribed five week course of ciprofloxacin after three weeks last summer due to onset of muscle/joint pain (known potential side effect). This condition has become progressively worse and I've read some horror stories online about people becoming crippled by arthritis-like symptoms from severe fluoroquinolone reactions.
Stab in the dark.
Yes, I have to take stool softeners and extra fiber or I will have horrible constipation. But it’s worth it to keep on moving!
Thank you for sharing all your details. A 29 year old should not have to be dealing with so many issues and pain. I will keep you in my prayers. Take care.
I feel for you. I suffered for years with constant pain and the doctors never found anything wrong. They even told me to seek counseling. Finally I found a Neurologist that did listen. He did an EMG and said something wasn't right. He ordered genetic testing and I finally found out I have Hereditary Nerve Pressure Palsy, a very rare neurological disorder that most doctors never heard of. Pain management has helped with nerve blocks, injections and nerve alations. Most pain meds do not work because it is nerve pain. So I constantly use a TENS unit and heating pad and take a motrin. Which helps subside the pain. The only way to find out the source is getting genetically tested. I wish you the best and I truly know what you are going through.
I feel for you so so young and to have so much pain.I totally understand how you feel doctors passing you on,Just to tell you you are not alone.All I can say is try to stay positive and keep moving if can at all.Pain means you don’t do physical therapy but I really feel movement helps do much.Tell you my story I simply broke my wrist in 2019 ,prior to covid.I lived with excruciating pain treatment delayed due to covid .Diagnosed CRPS by neurologist but Orthopaedic said Carpel Tunnel release ,so had that surgery done ,which probably made nerve pain worse.So no doubt all your surgeries some nerve disruption or damage.I have seen countless consultants and doctors who make you feel like they have done all they can and simply pass you on.I got an SCS implanted still on all pain meds, so no idea if that working or not.It was a major surgery if had known what it really entailed would have thought twice about.But now finally I have pain under some control I went on Ketamine.It totally impairing not a long term solution but it settled pain so I can function.Busy Mum of three kids.I can’t stay on Ketamine cause of impairing side effects it is a tranquilliser !so I asked alternative is Low dose Naltrexone apparently has no side effects.I have no idea if your pain management will agree to try this.I find the Pain consultant has mapped out a plan for you so only when you have tried everything blocks, pulse treatments you name it .Then will they go to these drugs.But they need to get your pain under control so you can function and move.Hope this helps.