When to ask about fatigue?

Symptoms & Treatments
1

It’s been awhile since I’ve posted, for many reasons, including a bad fall, surgery and rehab, and a move 2500 miles across the country…

As I imagine most of you have, I’ve dealt with fatigue for many years. After I finally began receiving treatment for PsA in 2012, pain reduced markedly. But, fatigue has continued to be a constant companion, sometimes getting worse, as it is now.

In December 2022 a physical medicine and rehabilitation doctor identified through x ray that I had two new stress fractures of the sacrum, Ikely due to osteoporosis. I thought, ah, that explains my recent increased back pain and fatigue (in Nov-Dec).

I was better by early January when the doctor saw me again. And, that is the only way healing of the fractures is determined: patient report. So, he said that I didn’t have to go back.

But, now, I am worse again and taking it easy when I have to. But, I am worried.

Fatigue is a nonspecific symptom, so common in PsA, poorly understood, often ignored, and, to top it off, a symptom of many diseases, including ours, heart disease, cancer, and so on…

I will ask the rheumatologist about fatigue when I see her soon. I am also considering going to see my PCP and/or the physical medicine doctor. I am just so sick of doctors right now. What are your thoughts about fatigue?

2

I’m afraid this is very wrong. I too suffered two stress fractures in my pelvis due to osteoporotic changes and was monitored throughout their healing before being signed off. I also suffered three lumbar vertebrae fractures which were again monitored before being signed off.

Along with a weird hip wing tip fracture which caused them all to think I might have myeloma, thankfully I didn’t and I cracked a rib in an MRI machine too.

But far more importantly I also started osteoporitic meds which now after two years have increased my bone density very thankfully back to ‘normal’. Indeed from the moment I started those meds I haven’t yet broken anything else.

I am however in the UK.

Fatigue to me means PsA disease activity, so odds are your PsA disease control isn’t optimum. But they should also be checking things like your iron level, B12 level and vit D level also. As all those can contribute to fatigue as well. Mine are monitored regularly usually every 3 months.

3

Thanks for your reply, Poo_therapy. Feels good.

Cracked a rib in am MRI machine! Wow! Lying down and not moving!?! How were you monitored for the other fractures prior to being released from care? Any tests or just reporting in to the doctor?

Unfortunately, the osteoporosis medications don’t seem to be helping me as much as they are helping you. But, I’ve recently been switched to Prolia, and that one may be better. We can’t check it, though, until I am further out from surgery as surgery affects the reading.

Your comments about disease activity, vit D, iron, and B12 are helpful. I will ask about them when I see the rheumatologist in about a month.

4

They just xrayed me regularly to make sure they were healing. The med I was put on for osteoporosis was called ibandromic acid taken by tablet once every 28 days. However the first review of that via the DEXA scan was two years. My understanding at the time was that it was a bit pointless checking before that time as it takes time to work. If you are at higher risk they can infuse you once a year which should do the same thing. Regardless I don’t believe these meds work at all fast so it’s a real wait and see and be careful in the meantime.

5

Yes, that’s my experience, too.

6

Hi @Laura108, oh yes, that on going fatigue! I find that it comes and goes, sometimes it is a direct result of constant pain and at other times it just runs on its own. Your profile indicates that you are not on a biologic…that surprises me. If that is the case, you might find that other meds are more effective and better for you. Please remember, the goal isn’t just to treat the PsA symptoms but also to slow/halt the progression of the disease. I am convinced that the methotrexate that I was on was causing a lot of my fatigue and when I went to a biologic and now Rinvoq without methotrexate I am less fatigued, less often. For a long time, I was taking methotrexate along with a biologic and always continued to fight fatigue.

1 Like
7

Thank you, Amos, for these helpful thoughts. Yes, I’m still not on a biological. I did try Humira for 3 months, but it had no effect on my pain—and was so, so expensive! Methotrexate is still my only medication. Interesting that you’ve concluded that it contributed to your fatigue. I have wondered about that. I will explore all this with my doctor. Thanks again.

8

Three months only on Humira is a really short time. Biologics don’t reach full efficacy for a year. I’m on my third biologic now (5th PsA med) called Cosentyx but it didn’t start working until month 8. You do need patience sadly.

Thankfully I’m in the UK so all my PsA meds are totally free for me. I pay nothing other than I work and pay income tax.

9

I wish I had a really amazing answer for you. Fatigue has been something that I have dealt with for the last 15 years. It’s not always equally bad, and it clearly responds to some of the medications so it is clearly associated with inflammation levels at least to some extent.

I think the best thing that I can do for myself is make accommodations. For example, I do work but I don’t work full time. My work day is generally split into two parts, which allows me to rest in between as needed. I also try my hardest to move every day and get some sort of exercise. It could be as simple as a walk as long as I’m not dealing with any major obstacles to mobility.

10

If only the US had a better health care system! You are so lucky, Poo_therapy, not to have to pay exorbitant prices to the pharmaceutical companies. It doesn’t look like it is going to get better here any time soon.

Interesting, that biological take so long to work. I had no idea. Worth knowing about and exploring.

Yes, Stoney. Thank you for these thoughts. Adapting to what the body needs seems to be a major skill set for us. You aptly pointed out reducing work and getting exercise.

I am currently debating applying to a 5 year teacher training internship. One of my big questions is exactly what you raise: what are the personal energy costs? Will I be able to do it? For five years? I don’t know the answer to those questions…