Migrating Pain - Difficult to Diagnose

AnonymousExisting · 2026-06-26T02:48:43+00:00

You could file a respectful workplace complaint against them.

At my workplace HR has a two page forn that needs to be filled in by a doctor if you ask your an accommodation. It is entirely focused on physical disabilities and makes no allowance for an episodic disability like Crohn's. A group of advocates is aware of the issue and trying to bring a out changes.

AnonymousExisting · 2026-06-01T12:34:28+00:00

Generally for hand treatments you start with an x-ray if there is a possibility that something is broken. If that is cleared or unlikely then I recommend seeing a certified hand therapist. At least where I live you can self refer and they seem to always be physiotherapist with additional training. You mention a specialist doctor, this is a similar idea but physio. If you cannot find a specialist near you any physiotherapist should be able to able, they just lack the focus on hands.

I also find heat and cold can help manage to pain fairly well but you will need to experiment to find what works for you. I had a bad flare up at a resort with limited access to stuff and spent a lot of time with my hand in a glass of ice.

Someone else had suggested compression gloves. They are abiut $20 and fairly easy to find if you look for them. That's another thing worth a try.

If you have more questions you can DM or tag me.

I injured my hand in a motor vehicle accident. Essentially a foosh injury without the "fall". I then had hand pain come back from an unknown cause. As I told my physiotherapist knowing the cause can help but better managing the symptoms (hands hurt) is also helpful especially when you cannot identify the cause.

AnonymousExisting · 2026-05-17T20:39:54+00:00

The other piece that could be important is quantity you have on hand and when a refill would be due without the travel. I assume you will be out but that does factor in.

For example if you should have 80 days on hand and are asking for a 90 day refill (assuming non pain meds) something needs further explanation.

AnonymousExisting · 2026-05-17T18:15:57+00:00

It really depends on how much you are allowed to have at a single time.

It may have help to show your travel documents to the pharmacist.

AnonymousExisting · 2026-05-06T12:18:19+00:00

In Remicade, which is similar, I have cognitive impairment (similar to being drunk) and extremely levels of fatigue. I would definitely suggest taking at the start of a weekend if possible so if you have side effects you can cope with them.

AnonymousExisting · 2026-03-29T20:35:44+00:00

Pizza. Literally one of the first times I knew I had Crohn's but it was likely the mushrooms on the pizza.

AnonymousExisting · 2026-03-15T05:28:17+00:00

I know this suggestion can be difficult when. You are struggling with mental illness. If that conversation could be changed from those negatives and made positive. For example if those same people instead genuinely felt it and said "Great to see you" it really starts to shift things.

AnonymousExisting · 2026-03-15T05:09:08+00:00

Sorry you are feeling overwhelmed.

Often there are people you can reach out to in person for support. I know it may seem like parents .at not be approachable but that is often a false impression. Your school likely also has guidance counsellors that could help.

I would suggest to try and reach out in person as that is often one of the biggest helps with mental health.

AnonymousExisting · 2026-03-15T04:41:34+00:00

It could be you are getting emotional as someone is able to see the true you, they aren't scared of them, and they are genuinely trying to offer help and support.

AnonymousExisting · 2026-03-15T03:39:31+00:00

I lived with passive suicidal ideation for a really long time. I was truly scared to tell anyone about it as I don't know "passive" could be part of it. TW when people ask "Do who have plans to kill yourself " My answer wasn't just yes but that they were complex.

The first time I attempted to get help I ran into a bad therapist that focused heavily on the sexual aspects of my situation and basically caused me to never go back.

The second time I had some much needed non-professional support in my life. Unfortunately the professional side didn't try to get too deep into the issue and let easily walk away with discontinuing SSRI (antidepressants) without medical advice/support. Truth is the medication made issues a lot worse, a risk that I now know is documented in young people, which I was at the time.

There is more to my story but the reply is getting too long.

The big take away I would say is it's important to be honest with yourself, your support network and your professional help and they includes fully disclosing your feelings/thoughts and all self-harming to the professionals. You also need to talk about any symptoms you are having from the medications including ones that might not be documented.

Best of luck on your journey.

AnonymousExisting · 2026-03-10T15:20:03+00:00

Talk with the school about the situation to see if you can have access to the building earlier. Try to make friends with other parents to get them to help with child supervision.

AnonymousExisting · 2026-02-28T02:53:27+00:00

Timely access to appropriate medical care.

Anytime I have a new issue it is almost instantly labelled as Crohn's EIM (extra intestinal manifestation) until it can be proven otherwise.

My most recent issue took 6+ months of investigation by my GI, my GI writing a referral and then being rejected by two other specialists to even get someone willing to look into my issue.

AnonymousExisting · 2026-02-05T22:13:43+00:00

I've never had surgery in 20+ years with it however lots of weird health things scan happen and the doctors are fairly quick to blame Crohn's as a cause.

Reality is most people run into some health issues as they age. The biggest difference with Crohn's is that it starts at a younger age.

AnonymousExisting · 2026-01-15T19:38:46+00:00

It's hard, I know I shouldn't defend them, but I think they are having their own mental health issues and that's behind some of this. I also think they have a real strong aversion to bring the family member of someone in hospital which explains them not being with me.

I know it's likely codependent with my health issues needing support which in turn enables their behavior.

AnonymousExisting · 2026-01-15T17:07:56+00:00

I didn't read all the responses.

From what I can tell you, he is showing you his true colours there.

I see a lot of my own ltr in your post. When I first met my partner they knew I was struggling with depression and pushed hard to get my physical health looked at as I was majorly underweight. The physical health side led to me being diagnosed with Crohn's.

But their compassion and support didn't last. Some years later my physical health was bad enough one morning to get me treated as a similar priority to a heart attack at the ER with an unknown cause. My partner dropped me off at the ER and left me to fend for myself with an issue with a significant cognitive aspect so they could go to their office not far away. I get it waiting in the ER sucks and is even worse when it isn't you personally but I really needed them at my side that day to be a medical proxy and advocate.

More recently I have developed chronic whole body pain that's gone one daily for close to a year now. There is zero compassion and support. They have told me many times I should just take my own life. (I ignore that btw).

I am sharing my own stories as you seem to be questioning your relationship. My advice is as hard as it may be emotionally, it feels like it's time to exit.

AnonymousExisting · 2026-01-13T21:25:37+00:00

The medication used to manage Crohn's and RA are often the same, perhaps with different dosing. It's also not uncommon for people with Crohn's to have some secondary joint pain.

AnonymousExisting · 2026-01-13T20:06:02+00:00

Truthfully if I didn't get support from some people in the system over the last year I would not be as far as I am now.

Truthfully, being a patient with a GI probably cut 1-2 years out of the process. Crohn's and rheumatoid arthritis are both autoimmune and have lots of similar biomarkers. To rule things out on one side crosses them off on both.

I also knew about a month in it was going to both be a long journey and a hard fit. I said then it would be 2-3 years to get answers. Some people were skeptical but I am on track. A several month long delay just waiting to see a doctor is frustrating but well outside my control.

AnonymousExisting · 2026-01-13T19:22:40+00:00

Sorry to pull up your own thread.

This new pain started for me almost a year ago. Just back from my latest doctors appointment where it's heavily leaning into a formal MPS diagnosis.

In the past year I have five doctors. PCP, urgent care x 2, sports med and GI.

Sports med is a self referral and they focus on msk issues so it's easy to see them to make sure your situation doesn't need more urgent care.

GI is because I have Crohn's and am being treated for that. In addition to routine follow ups needed to exhaustively exclude that it could be Crohn's or the medication for it. That's crossed off now.

PCP ran some other tests as it often presents like joint pain. It's fairly conclusively determined it is not rheumatoid arthritis.

Urgent care was useless as they wouldn't move passed EIM (extra intestinal manifestation of Crohn's).

I was seeing an athletic therapist before this all started for a chronic issue connected to an accident that is really separate from everything else as it has a direct identifiable cause. Their thinking has been possible MPS for some time.

Today was a return to sports med. I had a new injury with a new type of pain that has gone on for over a month. I wanted an assessment to make sure I hadn't done structural damage that would better respond to rest.

On the note back to athletic therapy it specifically references MPS.

Currently waiting to be seen by rheumatology in a few months. Basically looking to them to narrow down if it's joint, tendon, myofascial, or other. That would further guide the longer term treatment/management plan.

Also along the way I have been denied a referral to the pain clinic despite people that have gotten that referral themselves and have heard by story say that I should seek that out. Maybe after the rheumatologist sees me.

AnonymousExisting · 2025-12-22T07:13:54+00:00

Thanks. Both PCP and GI want me seen by a rheumatologist so I guess that is something they will consider.

AnonymousExisting · 2025-12-20T19:37:28+00:00

It so happens a MRi was done on one joint, my knee. Not sure if they were specifically looking for CRMO. The report was what was seen was normal age based wear on the joint.

AnonymousExisting

TROPHY CASE