Weird, Undiagnosed Injury/Disease Story + Treatment Log

Hello MP. First time poster but long time follower. I thought I'd come here for some help. Before you read this, please know that I've been to two physical therapists, a neurologist, primary care physician, and an orthopedic surgeon specializing in hands. They can't find anything. So I thought a fellow climber might. If you have any thoughts, ideas, questions, or anything else, please write a comment. I'll be posting in the future about how things are going so anyone else experiencing this same thing can get better!

My Story

30 year old male climbing since 2009. Very seriously (3x per week every week) since 2016. Did my first outdoor 5.12 in 2020. Second one in 2021. Way very excited about training for upper 12s this year. Bigger for a climber. 190 lbs most of the year. Maybe 185 if I lay off the burritos. Have had shoulder injuries in the past. Two cortisone shots and PT helped tremendously. Consistently do PT for those as pre-hab. 

In April of this year, had a very weird experience at my local crag (American Fork Canyon). Despite coming off a few weeks rest, went climbing moderate 10s with my friend and my forearms cramped up. Pumped to the point that I couldn't finish the 5.7 slab of the 5.10 I climbed. I thought I was just overtrained, so I dialed it back. Looking back on my training log, I had only climbed 6 times between March and April (had my first baby girl). Tried again in a few weeks. Same routes. Same story. Pumped beyond anything I've experienced. And the pump didn't go away for days. Rested for a full month and my symptoms got worse. 

Around this time I started going to a physical therapist. After 10 sessions of mostly deep tissue massage, I realized it wasn't helping (this was free through insurance, so I kept going until insurance stopped paying). Around this time, my symptoms got more nerve related. My fingers were tingling and have been tingling non-stop since. It is all of my fingers, not just a few of them. I feel weakness opening a jar. Burping my baby. Basically just anything that shouldn't hurt does hurt. 

While my hands would feel ok, anytime I tried to climb I would immediately get pumped. Even climbing 5.9 was completely out of the question. Couldn't finish the route. While I bouldered some in June, I stopped climbing in July and haven't touched the rock since with one exception, climbing 5.6 in Big Cottonwood Canyon (Steort's Ridge. A must do if you are in the area. Total blast!)

After seeing the PT, I was referred to an orthopedic surgeon. He tested me for carpal tunnel with an EMG, which came back normal. He also did two cortisone shots in my hands to see if they would help. Nothing. Gave me gabapentin which did nothing but make me super tired! He is an incredible doc and I have nothing but respect for him. But in the end, it was beyond his expertise. So he referred me to a neurologist.

In that time, I got a new primary care doc. He deserves a shout out. Dr. Obayashi in Roy, UT. 10/10 would recommend to anyone! He also recommended I go to a PT specializing in hands. I went to see them for four sessions but in the end she told me it wasn't helping and she didn't want to waste my money. 

From the time I saw the ortho (August) to when I saw the neuro (October), my symptoms got much worse. Any manual labor caused serious pain. Even shoveling light mulch or sweeping would cause my hands to seize up, like my hands were cramping. 

Neuro ran a bunch of blood work for Lyme's disease, autoimmune diseases, multiple myeloma (cancer), B12 deficiency, and a whole mess of other stuff. Also had me do an MRI with and without contrast of my cervical spine and brain. This was to check for MS, brain and spine tumors, as well as blocked nerves. Everything was normal. He didn't have much of a recommendation of what to do next. I have tons of friends who recommended going to see a naturopath. We will see.

So, now I'm back to square one. Frustrated, but also grateful I'm not dying. At least not yet haha. 

What I'm trying: 

I made a list of everything I could try and wrote down what I thought would work and what was the least expensive. Right now I'm trying CBD and a very intense stretching program by a guy named Joe Hippensteel (here is a link). In my mind, my body is extremely tight. Both of my PTs said the same thing. While they tried to release my symptoms using deep tissue massage, I feel it might have made it worse. So I'm hoping that releasing some tension, hopefully all the tension, in my body will help things go back to normal. That is my first test. If in 6 weeks I haven't seen an improvement, I'll try something else.

What about you?

Do any of you have similar symptoms? How did you get better? What worked? What didn't? I'm all ears. Even if your idea is wild, I'll try it! Also, if you have something similar, shoot me some questions! I'd love to help any way I can!

If you did read this, thank you! I hope that I find answers so someone doesn't have to go through this same issue! Makes you realize what an incredible sport rock climbing is. I miss it everyday. Do me a favor and just yell as loud as you can next time you send a route! I'll be back there soon!

Maybe another Lyme test or find a Lyme expert. Shit is super weird. Hammered a friend of mine until finally diagnosed. Seems like Lyme symptoms can be all over the place. 

Could be way off, but possibly thoracic outlet syndrome?

Long shot, but possibly atypical exertional compartment syndrome?  PM me if you want to discuss. T

Just want to say, sorry you are experiencing such a frustrating situation.  And congratulations on the new baby.

I have many known issues in my back and neck, which can affect the nerves that run into my arms (tingling, weakness).  An inversion table (recommended by my orthopedic surgeon back doc) does seem to help. So does regular steep climbing.  The other thing which has helped a lot was finding an exception shiatsu practitioner.  What he does is quite painful for the hour he's working on me, but keeps me able to move.  And regular deep tissue massage work on my upper back and neck area muscles is critical.  I know you said this was making things worse but people's skill in this area can vary enormously.  Anyway good luck, I hope you figure it out soon.

Ditto to the Lyme expert recommendation. My partner had a lot of seemingly unrelated symptoms one of which was nerve issues radiating from his neck through his arms. He got tested for Lyme maybe 2-3 times over the course of 2 years of symptoms all of which came back negative and then went to a Lyme specialist who ran a battery of tests and he ended up being diagnosed with multiple tick-borne diseases. After about 6 months of treatment he finally felt better.

The other suggestion I’ll add to those who already responded is accupuncture. I have peripheral neuropathy in my hands and feet which causes them to have constant tingling, numbness and sometimes pain. I do a regimen of medical marijuana (high CBD:THC ratio to reduce the psychoactive effects) which I use sporadically, when and if, it’s too much to handle for sleeping and such, a CBD / capsaicin topical cream and weekly acupuncture. When i added the acupuncture about 10 weeks ago things stabilized and started improving. It took about 4 sessions before I felt a difference. I still have constant tingling in my fingertips and feet, but it is way more manageable. I was previously climbing in the 5.10/5.11 range, I couldn’t climb for several months due to the pain of the nerve damage and serious pump during climbs.  I’m now climbing at the 5.7/5.8 range. Hopefully I’ll continue to improve but in the meantime I’m happy to be back at it.

Hope this helps in some way.

Best to you…

phylp phylpwrote:

I have many known issues in my back and neck, which can affect the nerves that run into my arms (tingling, weakness).  

OT/CHT here.  My gut feeling is that phylp is right; any time I hear about finger tingling in conjunction with loss of grip strength I start thinking c-spine.

My best internet guess is you’re dealing with a slightly bulging disk that’s pressing on a nerve.  I know you said you’ve had an MRI but you didn’t mention disk issues in the list of what they checked for (although it’d be weird for a neurologist not to see that).  Minor bulges can be missed thought and deteriorate/grow over time, making symptoms worse.

If it’s an option, get another MRI.

I just want to mention fibromyalgia. It is usually seen as a woman's disease but can certainly occur in men. I can see the diagnosis being overlooked in a young man such as yourself. 

Thank you all so much for your replies and good wishes. It means more to me than you know. I'm overwhelmed. 

I am going to for sure add shiatsu massage to that list, thank you phylp! Also you said steep climbing helps your back? That is very interesting. Might be a good excuse to get wildly pumped again haha. When you say deep tissue work, are you saying on your own or with a therapist? Acupuncture is on my list and probably my next move after this stretching program is over.

F Wheeler, thanks for your comment. To clarify, my neurologist did also check for disc issues and found nothing. I asked him directly about those and he said it wasn't seen. Also didn't see any sign of thoracic outlet syndrome, from the MRI or the EMG I did. F Wheeler, do you have any other recommendations on treatment? I think at this point another MRI is not in the budget, and even if it were, I would be skeptical it would show up different.

For sure still considering fibromyalgia. My neurologist mentioned it as a possibility. I just honestly have no idea what to do with that. I don't know what doc to see, or how I would get treated/what is possible.

Kelly O, I wanted to ask you something as well. What is a lyme specialist? Is that a doctor or some other type of practitioner. Based on my initial tests it doesn't seem likely, but I suppose it is possible. Also, I wanted to ask about CBD. I live in Utah and we have some tricky laws with CBD/marijuana. You can get some of it but not much. Is there such thing as a CBD pharmacist? I've tried a few products and one has helped slightly, the others have done nothing.

Are you on any medications or supplements?

Are your symptoms predominantly on one side, or evenly symmetrical?

Thanks Chuck. Both sides and identical. I'm not on any supplements. I take CBD to try and help with the pain. Once a day at night. But that was a recent addition. Way after this thing started.

Rob Metcalfwrote:

I am going to for sure add shiatsu massage to that list, thank you phylp! Also you said steep climbing helps your back? That is very interesting. Might be a good excuse to get wildly pumped again haha. When you say deep tissue work, are you saying on your own or with a therapist? Acupuncture is on my list and probably my next move after this stretching program is over.

Acupuncture sounds like a good idea.  

So, I think with me, both the inversion table and the climbing are doing the same thing which is probably a combination of gentle stretch and decompressing something.  In my case I know I have degenerative disease in my neck, some bone on bone, spurs, and garden variety arthritis .  You don't have any of that but I was struck by the rather sudden onset of your symptoms, which started after you had been climbing less due to your baby.  And then you took a month off and got worse.  One interpretation of this is that whatever is going on, which from my uninformed perspective sounds nerve related, may have already been there but maybe your regular routine was doing something mechanically which was helpful. 

 I have a massage therapist do the massage work.  I also have naturally very tight musculature and I know from many years of this that my upper back & neck muscles being so tight somehow affects the nerves. The result is neck pain and at the worst the electric symptoms running down the arms. Whether it's a muscle swelling issue causing compression of something, I have no idea, I just know it happens.  

However, the slowdown of climbing and the onset of your symptoms may just be purely coincidental.  The severity of your symptoms, the sudden onset, and the fact that is is bilateral may be pointing at something systemic, as others have suggested. If there is an infectious causative agent, it may be affecting your nerves. Besides Lyme, which is a bacterial (and can be treated), you might also consider EBV., which can also cause muscle weakness.  You can get an antibody test for EBV. In healthy people a reactivation of EBV would typically resolve on its own with time and rest, sometimes with supportive antiviral therapy.

Anyway, again, good luck.  Complex things like this are so difficult for the medical profession (which I highly respect) to get a handle on.  But it sounds like you are doing everything right, seeing good people, ruling out the obvious, trying a variety of treatments.  Let us all know how it goes.

Rob Metcalfwrote:

Rob Metcalfwrote:

Here’s the doctor that my partner went to for Lyme: https://www.drlesleyfein.com/

I’m not sure if there is a similar type of doctor in your area but you can see her qualifications etc on her website and see if you can find someone similar in your area.

For CBD I use this website: https://elixinol.com/ which was recommended to me by my integrative doctor (she also recommended the acupuncture treatment as well as gabapentin and b12. I didn’t go the gaba/b12 route bc my regular doctor indicated there was limited info that they worked well for neuropathy). The Elixinol topical sports gel product is the one I use that has CBD and capsaicin and that has been somewhat useful. The acupuncture has been the best for me so far.

Regarding a CBD/marijuana pharmacist, I’m not sure of the laws in Utah but where I live (NJ and Florida) you can apply for a medical card depending on your diagnosis (which might be tricky since it sounds like you may not have a confirmed diagnosis - neuropathy may fit the criteria though if medical use is legalized there). Here you basically go to a doctor who is licensed to approve you for medical usage and then they typically give you some options - edible, vape etc talk to you about what may help for various conditions and then if it all makes sense you get approved for a medical card and then can buy medical grade thc or thc/CBD combination from specific dispensaries. Some states are looser than others obviously and some states have recreational use approved also (ie Colorado). I’m super cautious with it, as I don’t want to build up a tolerance and I like to be lucid. :) 

Bummer to hear.
Sounds like an extreme version of the compartment syndrome I have experienced. Uptick in pumpy climbing led to numbness/weakness in fingers for 2+ weeks. 

Rob - 

I would for sure go to a Lyme specialist, many many people have stories of going to regular doctors for years who missed the diagnosis, including a close friend of mine. It’s worth being sure about.

The other thing that pops quickly to mind is a magnesium deficiency. Your symptoms are severe but it can’t hurt making sure you are getting proper nutrition. Magnesium can really make a difference for people. 

**CBD is almost positively a waste of money. Everyone is trying to make $$ off it right now but it’s only been proven to have a positive effect on people with epilepsy. Everything else is speculation and the vast majority of it snake oil-type salesmanship. 

Rob,

Someone up thread mentioned that you might have exertional / chronic compartment syndrome, and as I was reading your original post that's what I was thinking as well.

Basically, your skeletal muscles have a sack (like sausage casing) around them called fascia.  If this fascia is too tight you get a build up of pressure inside that compartment.  This increased pressure can reduce blood flow to the muscle, causing much of the symptoms.

Though it's not common in the arms (much more common in the legs), climbing could cause it.  A good friend of mine had symptoms very similar to what you described (quick to fatigue, pump, pain, slow to recover, feeling of tightness, etc.) in his calves for years before being diagnosed.  He was a sprinter, and was running 5-6 days a week.  If you were climbing 3+ days a week, you could get it by doing too much too soon.  

Like you, he got very little relief from rest, massage, stretching etc.  He ended up needing to get surgery (fasciotomy).  He had the surgery about 10 years ago.  He still can't run, and things like hiking uphill still cause him pain, but it's much better than is was.

You would need to see a specialist to get diagnosed.  Basically, they insert a needle with a pressure gage into the compartment, and measure the internal pressure pre / post exercise.

Anyway, look into compartment syndrome, and see if you think it makes sense for what you're experiencing.

Good luck figuring this out

Hello everyone! It took me a while, but I finally have some answers. What a blessing! Wanted to share this here in case some else is struggling with the same thing. 

After I saw that neurologist and they found nothing, the pain actually moved to my neck. Which turns out, is terrible. Started doing a ton of massage in December of 2022. That helped but not for long. Then got worse again. Started back up with two other PTs. Then chiropractors. I think 5 of them. They couldn't find anything or do anything to help. In April 2023, in desperation, I went to a stretching clinic in California. Same one that David Goggins talks about in his book. Dude's name is Joe Hippensteel. He seemed very confident that his program would help. 

It is a great program, but super intense. 2 hours of stretching per day everyday. Did that for about 8 weeks after the clinic. Had incredible results! Bought a new mountain bike as a celebration for it being done. Just felt incredible. Was about to post on here how great it was. 

Then it came crashing down. Stretching was causing me more pain. In June of 2023 year it moved into my hips and my legs. By July I couldn't walk further than about 1/8 of a mile. My walk turned into what I call, "The Senior Shuffle". Picture the slowest person you've ever seen walking. Probably 100 years old with a walker. Then slow down. I tried to stay positive. Made a lot of jokes. But to be honest I was pretty devastated. 

Thankfully, I have the worlds best primary care doctor. Dr. Obayashi in Roy, UT. Also need to give a shout out to my main man Spenny for the referral. If you are anywhere in the Wasatch Range and have weird health issues, Dr. Obayashi is 100% your guy. Willing to listen and, more importantly, be wrong. Most doctors hate being wrong. So much so that they won't try stuff. He will try, and try, and try again. Never quit on me.

I had seen him a bunch of times and he would give me crazy diagnoses to test. McCardles disease was one of them (basically like permanent rhabdomyolysis). One day he tells me to get a test for something called ANA, which is a general test for autoimmune diseases. My symptoms are not traditional for something like rheumatoid arthritis, but at that point I would have done anything. Comes back elevated, nothing crazy hight. But literally the first lab in 100s that has ever come back abnormal. A lead. 

He refers me to a rheumatologist. If you haven't ever tried to see a rheumatologist, it is impossible. Couldn't even get in because I didn't have the right labs. On the ones that were accepting new patients, 4 month wait. Thankfully, my other main man Jake referred me to a woman named Dr. Lee. She has her own practice in Murray, UT. It is called Lotus Rheumatology. I was really nervous at first because she didn't take insurance. First appointment was $500. I went back and forth for weeks but ended up going. 

Best $500 I've ever spent. I would have spent 4x easily. Dr. Lee was in the room with me for over 90 minutes. Her first question almost brought me to tears, "When was the first time you felt unwell?" No one had ever asked me that. For the full story. So I went all the way back. I mean like 5+ years. She asked incredible questions. Then started pushing on my joints. I'd say about 60% of them felt sore and a few were very painful. 

But then the weird thing. She pushed on elbow, by far the worst joint. Right there in the room, she busted out a ultrasound and saw I had tendonitis. 

"How could I have tendonitis when I haven't done anything?"

She told me she though I had something called Spondyloarthritis. It is an autoimmune disease that affects people in different ways. Mine goes after my tendons, specifically where the tendon connects to the bone. That is what was causing all my pain, numbness, and every other symptom I had. When I had massage, it felt good but never made it better. That is why. 

She did some more test to confirm it and 2 weeks I had an official diagnosis. That same day I started on a drug called Cosentyx. It is a biologic that shuts off proteins that make my disease worse. $5k per shot, one shot per month for life. To all you young bloods out there, this is why you get insurance. After 8 weeks, I am so blessed to say it is helping! I've been bouldering once a week! I'm actually headed to Moab this weekend to climb easy routes on Wall Street! Best part, the drug should completely stop the progression of my disease.

First time back climbing was in August of 2023, just a month ago. I did Outside Corner in Big Cottonwood. Halfway up pitch 1, I started bawling. I couldn't believe where I was. That after a year and a half of suffering, I was back doing something I love. Climbing. With my friends. In a beautiful setting. 

This disease has taught me a lot about climbing. How it is very important and at the same time completely pointless. It taught me to enjoy easy days and not worry about pushing grades or trying hard. A day out climbing V0s is about as fun as anything else. It also taught me how much I love it. To be more careful with it, because losing it is terrible. And to help other people along the way. 

If you are struggling with chronic illness, I have some advice. 

#1: DON'T BELIEVE A DOCTOR WHO TELLS YOU IT'S IN YOUR HEAD. They are wrong.  And they just aren't your doctor. You're #1 goal is to find the right doctor. I saw 15 doctors before Dr. Lee. While most were helpful in some way, none of them figured it out. Dr. Lee figured it out in 90 minutes. Find the right doctor. 

#2: DON'T YOU DARE GIVE UP. I mean it. I had many low points during my journey. Times where I really didn't think I could keep going. I kept going and I promise if you do it will get better.

#3: CLING TO THE PEOPLE WHO LOVE YOU. There are a lot of them. Tell them what you are going through. Don't wait until things get really bad. My sweet wife is 100% the reason I made it through. My parents, brothers, sisters, extended family, friends... couldn't have done it without them.

#4: CLING TO FAITH. I know Mountain Project is not a traditionally spiritual place, but 100% faith in God helped me keep going. Knowing other people were praying for me, fasting for me, or any other spiritual practice gave me strength to keep going. My own prayers helped me get through the hardest days. 

#5: THERAPY HELPS. I know it sucks. I hated making that call. But my therapist helped me get through the low points with perspective and exercises to calm down. It is worth the money.

If anyone has questions, shoot me a DM. We are all on this life journey together. I'm convinced part of the reason we go through hard things is to help other people get through their's. Would love to help you anyway I can.

Thanks for taking the time to carefully write this up for us, Rob. I am glad it finally worked out, and I'll try to keep your advice in mind. 

Hi,

I am so glad that you have an answer and a treatment that works! :-) And, that you are back climbing. 

So very happy for you that you persevered in the face of darkness to figure out what was happening inside you and you finally found relief and a plan forward. And love that you’re back to doing what you love! Sending you continued healing energy. 

Maybe i would add to your list of advice

#6: Be thankful for the biopharmaceutical industry that developed effective therapeutics for spondyloarthritis as well as other chronic diseases. 

It is the hard work of a very large group of scientists and drug development professionals that made it so that you received an actually  disease-modifying drug to effectively treat your illness, rather than the ineffective stuff that everyone else suggested in this thread.