Chronic Pain Struggles

Hello Doctors,

So last year, I shared my story with you guys about my struggle with chronic pain and disability. That post was titled " Kinesiophobia, Tendinopathy & Disability Situation; Interested in Pain&Rehab Consult". In that post I shared how your guys’ content had been immensely helpful in my journey to overcome chronic pain. At that time, I was self-managing my situation with what I had learned through your resources, but had mentioned that I was running into a lot of problems that I didn’t know how to address and therefore was interested in a pain & rehab consult. We concluded that that would be a good course of action and I got set up working with Dr. Derek Miles (who is awesome btw!). Derek and I had a great consult and he put together a solid rehab/training plan for me that I began working on right away. I’m very happy to say that I was able to make some amazing progress with his plan in terms of strength and functional ability. The chronic pain seemed to be improving. By all accounts, I was right on track to make a full recovery. But then, something happened…

I was making progress in the gym, getting stronger, building some muscle. But then I seemed to hit a plateau where even though I was getting stronger, my chronic pain symptoms were not improving anymore. At first, I figured this was just the ebbs and flows of training, understanding that progress isn’t linear. So I figured I’ll just be patient, keep sticking to the plan, make sure my load management and fatigue management are solid and we’ll be good to go. This was the Summer of 2022. At this point, I didn’t feel like I needed any additional help because I was very happy (and still am) with Derek’s plan and just felt I needed to give it more time. Then, I ended up having surgery - septoplasty and submucosal turbinate reduction. It ended up being a pretty brutal experience, I wound up in the ER twice for pain and bleeding complications. Thankfully, I’m all good on that front now. But it really knocked the wind out of my sails in terms of progress in the gym and overcoming my chronic pain/disability. As a result, I lost a decent amount of strength and my chronic pain had gotten a little bit worse. I thought this was probably normal and not a big deal, So I just slowly resumed the plan that Derek made for me and was trying to get myself back to previous levels and beyond. But around Nov-Dec of 2022, things really went downhill.

First, my chronic pain came back with a vengeance. But what I noticed is that my pain was no longer limited to my feet and ankles like before. I started feeling this sort of widespread aching and stiffness in other parts of my body like my knees, thigh muscles, my hip joints, my lower back, my neck, and of course my feet and ankles. Mornings have always been the worst for me. In order to get out of bed I have to use crutches because my pain and stiffness is really bad. Also, I started struggling with near daily fatigue despite having good sleep hygiene and sleeping through the night. I’ve been having some cognitive difficulties too, difficulty concentrating and remembering things (which was never a problem for me before). I also struggle with abdominal discomfort/pain and bloating almost every day, as well as an on and off struggle with constipation. From the end of last year until now, I didn’t really think that anything serious was going on. So I was just trying to train through it thinking that eventually things would get better. But things have not gotten better and now I’m convinced that there is something wrong with me. I am going to see my PCP hopefully soon to discuss all of this with him. Based off my own limited research, it seems like maybe I could have fibromyalgia because my symptoms seem to match that condition the most. I’ve researched other conditions that have similar symptoms such as hypothyroidism, rheumatoid arthritis, lupus, multiple sclerosis, chronic fatigue syndrome, polymyalgia rheumatica, osteoarthritis, gout, psoriatic arthritis. Ultimately, I don’t know what’s going on, but there is something seriously wrong.

Ultimately, I really need some help and guidance. What do you think I should do? What steps would you recommend that I take to begin the process of figuring out what’s wrong? I’m going to see my PCP soon and he will likely refer me to a specialist, which I think will be a good start. Beyond that, could you give me some guidance on how you would approach this? Any guidance you could give me would be so appreciated, as I am obviously very discouraged, depressed and lost. I am more disabled this year than I was last year, which is tough to deal with. But I am a fighter at heart though, so I’m not giving up and I still have hope that things can get better.

Hi there,

Sorry to hear about this issue you’re going through. It sounds like you’ve done an admirable job working through things the best you can with the help of Derek’s guidance - and we’re glad to hear that was helpful.

It sounds like you’re experiencing migratory pain and stiffness, worse in the morning, associated with fatigue and a variety of abdominal symptoms.

At this point, I agree that we’re beyond what can feasibly be addressed here, and does likely require some medical evaluation, if nothing else to rule out any medical contributors to your symptoms that haven’t been detected/diagnosed so far. Something like fibromyalgia is possible, but I am typically reluctant to make that diagnosis until I’m confident that there isn’t anything else going on, including inflammatory / autoimmune / rheumatologic conditions. This typically involves a physical examination, some blood tests, and in certain cases basic imaging of affected joints can be helpful (but is not always necessary). I think that seeking assistance on the mental health front would also be wise along the way.

Thanks Austin. Yes, I’m super grateful for Derek’s help!

Yeah that sums it up really well.

That makes sense. In your experience, how difficult is it to reach a definitive diagnosis in these type of situations?
Yeah, I agree it’s definitely time for me to get some mental health assistance. I’ve been putting it off for too long because I’ve been so focused on the physical symptoms.

There’s not really a clear answer to this, unfortunately – especially with the limited information I have here.

Although it is natural to “want” a definitive diagnosis, I would suggest focusing on ruling out as many potential causes as possible (after all, no one really “wants” to have a systemic autoimmune disease, for example), and managing whatever is left from there. Agree that this definitely includes the mental health aspect as well.

If my doctors are able to rule out autoimmune disease based off my examinations, testing, imaging, etc, how would they know how to manage my symptoms from there? Would it be a sort of trial and error situation - as in lets try this medication and see what kind of results we get, and keep trying different ones until we find one that helps the most? I’ve read that there are some good evidence based treatment options depending on what illness you have. For example, RA can be managed with certain meds. Fibro can managed with a different type of meds. My concern is that if we don’t have an accurate diagnosis, would we still be able to effectively manage my symptoms?

Of course, this is the entire point of diagnosis – to label/categorize someone’s condition for which there is a specific treatment that improves outcomes compared to an alternative management strategy. This is also why we tend to worry less about differentiating among diagnoses that all share the same treatment strategy, as is common in many non-specific musculoskeletal pain syndromes.

We can’t predict this, unfortunately. I think it’s more helpful to take things one step at a time, rather than projecting forward with these fears over things you may not have much control over.

Thanks for taking the time to answer my questions Austin. This has been very helpful! I was able to see my PCP today and after discussing my symptoms and performing some physical examinations, he thinks the best course of action would be to see a Rheumatologist, which I’m totally on board with. So I’m moving in the right direction. And I will definitely take your advice - one step at a time.

Sounds like a great starting plan!

Glad to help.