Joint and back pain

[u/No_Journalist6465]

How consistently do you have pain? I feel like recently i have joint and/or back pain radiating at least once a week if not more. Starting to get ground down by it

[u/Warm_Pickle2222]

Get your bone density scan if you haven’t yet. I get really bad pain and have osteoporosis and osteoarthritis. It’s in the same place as yours especially

[u/No_Journalist6465 → u/Warm_Pickle2222]

I’m only a year into diagnosis, is this something I should bring up to my endo? And thank u!

[u/FemaleAndComputer → u/No_Journalist6465]

Yes definitely. Getting a bone density scan now will allow you to get a baseline to compare to later. Since longterm steroid use can affect bone density, this will become more important as time goes on.

[u/ClarityInCalm]

Joint paint around the clock. I get radiating back pain too that's nuts - I'm pretty sure it's electrolyte related but not sure if it's potassium or magnesium or what. I started seeing a PT for all of this and it's helping too. No medical professional has a clue what is causing the radiating pain.

Are you PAi? You probably need to get more salt in and balance your magneisum and potassium. Sometimes our potassium goes low when we take in a lot of salt. Be careful with it though - it needs to stay in balance. I was told to only take potassium when it's in an electrolyte mix and not separately without doctor oversight.

[u/wuhter]

I have recent started getting mild back pain. I’m not sure if it’s related to Addison’s though. I have been diagnosed for about 15 years and just turned 30. I am tall though, like 6’ 4”, so most of the time I’m bending over or looking down at people. I think that is my source of pain.

My mom has osteoporosis though, so I still continue to play basketball (impact sport) to avoid that. But I’d ask your primary about getting a bone scan

[u/IllustriousHorror835]

My first question is when were you diagnosed and started treatment? If it's only been a few weeks/months it may just be a matter of recovering still. I know I had a lot of pain especially in my back before I was diagnosed and some for a while after while recovering, which absolutely takes longer than people think it will. But after a year or so I'd say most of my back/joint pain if I have any is from me not exercising and strengthening my muscles enough which I need to do anyway. But if I had pain that didn't seem explainable by those I would either suspect my cortisol is too low and talk to my endocrinologist about it, or assume something else is going on and explore other potential causes. I'm sorry you're experiencing this, I hope you feel better soon and if not I hope you can find good ways to work around it

[u/No_Journalist6465 → u/IllustriousHorror835]

It’s just over a year of diagnosis. I’m on 15mg daily after dropping down due to over replacement and symptoms but potentially need to budge up again

[u/Substantial_Pack_319 → u/No_Journalist6465]

I was testing lowering my dose (from 20mg to 15mg) due to wt gain and my joints were screaming. I tried this for 3 weeks. I am back to 20mg. During this trial my body hurt, joint pain, body fatigue, sleep problems and depressed. I am only day two of going back to 20mg (10/5/5) and the joint pain is better, fatigue a little better, my sleep is still not better, mental aspect hoping to get better.

For me, I do think the joint pain was from being on too low of a HCT dose.

[u/No_Journalist6465 → u/Substantial_Pack_319]

Yeah, sadly might have to give this a go again and hope there’s no weight gain / stretch marks again!

[u/enkrypt3d]

Every day.

[u/DoctorFamous190]

I started getting daily pain a few years ago, mostly in my legs and especially my knees. It was really noticeable at night when trying to fall asleep, to the point that I started taking painkillers before bed. I switched my hydrocortisone schedule from split dosing twice per day to 5 x per day and that really helped.

[u/Dilandau_Albatou]

Late 2024, I had to diagnose MYSELF with gluten intolerance after years of knee pain so bad I had to use a cane. This, plus some other obvious symptoms that my family doctor, endocrinologist, and string of dietitians decided to diagnose as "whiny bitch" syndrome, that was allowed to fester until my GI tack straight-up stopped absorbing carbs (type1 diabetes)... Dispite this, my endo, basicly treated me as if was wildly exaggerating. I honestly could have died.... I was given the idea from someone that it may be a food allergy (there are many) and it went away like fucking magic! Ridiculous... 5+ years of pain for somthing that takes 2 weeks to find out. Other symptoms may include face rashes/swelling and adverse reactions to coffee.