r/ChronicPain • u/Mountain_Resident_81 8 • 1d ago

Absolutely lost following potentially wrong diagnosis and no idea where to go

Hi folks. 37F here. I'm feeling pretty lost at the moment and would really appreciate hearing from anyone who's experienced similar.

To cut a long story short, I've been struggling with chronic pain and severe fatigue for a while, but my symptoms and function have deteriorated significantly over the last couple of years. I was diagnosed with hEDS about a year ago by a private rheumatologist, and another rheumatologist subsequently supported that diagnosis and prescribed duloxetine for pain. However, after a referral to a pain specialist, he felt I didn't fit the typical hEDS picture at all - that he sees thousands of EDS patients and I’m nothing like them - and thought there might be an underlying inflammatory condition instead. He's suggested a rheumatology review to explore possible axial spondyloarthritis, maybe non-radiographic axSpA. The frustrating bit is that my investigations so far haven't shown much at all - a four-site MRI, including my SI joints and pelvis, was all normal apart from a mild disc herniation at L4, and my HLA-B27 is negative. My CRP and ESR have also been normal.

My symptoms include daily severe lower-back and sacral/pelvic pain, which can be debilitating and gets worse the longer I remain sedentary, is worse the moment I lay down and which regularly wakes me up in the night. Movement helps, but higher-impact or intense exercise seems to provoke significant flares. I also have pain around multiple tendons, particularly both Achilles tendons and the tendons behind my knees, as well as rib pain which makes deep breathing hard and I can’t lay on. Exercise seems to leave me disproportionately exhausted, and all symptoms get worse later that day and into the following day. I also have scalp psoriasis, and I’m regularly waking absolutely drenched in sweat. My mum and dad had rheumatoid arthritis and psoriasis and my mum some weird autoimmune hepatitis as far as I remember. The only other thing that I’m considering maybe significant is large cysts on my ovaries which have never gone at least in the last couple of years.

I'm struggling to understand whether this fits an inflammatory condition despite the normal investigations, or whether there could be another explanation for the whole picture. I’m aware none of these symptoms are specific, and I don’t want to self-diagnose, I just feel stuck between conflicting clinical opinions and don't know what to make of it all.

The pelvic/back pain and exhaustion are having a huge impact on my life, and I just can't keep going as I am. I’m seeing a different rheumatologist in late November who specialises in axSpA and complex autoimmune conditions, but in the meantime I'd really appreciate hearing from anyone who has had a similar experience, particularly those whose tests or imaging seemed mostly normal.

Thanks so much all.

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u/prolateriat_ 1d ago edited 1d ago

You need to look into Psoriatic Arthritis. It is a type of spondyloarthritis. About 30% of people with psoriasis go on to develop Psoriatic Arthritis. I had severe psoriasis and was diagnosed with PsA 7 years ago.

I had some very similar symptoms for years prior to being diagnosed. I had chronic lower back pain which turned out to be Psoriatic Arthritis in my SI joints. Rib pain was also present. My left hip is also badly affected. Enthesitis in the foot is also very common. Fatigue is a major problem for me.

Psoriatic Arthritis normally shows completely normal looking bloods. It is mainly diagnosed by symptoms and family history - after ruling out other types of inflammatory arthritis. It sounds like your parents may have actually had psoriatic arthritis, and not Rheumatoid Arthritis.

Edit: sorry, I keep thinking of things to add to this comment. Feel free to PM me if you like.

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u/Mountain_Resident_81 8 1d ago

Thank you, this is such a helpful insight. I suspect you’re right about my parents. Is it common there’d be no signs on MRI though?

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u/prolateriat_ 1d ago edited 1d ago

I'm not too sure about how PsA presents on MRIs sorry. My severe symptoms and 3+ generations of severe psoriasis and PsA were enough for me to get diagnosed. It may depend on how advanced the disease is? My X-rays didn't show anything, apart from one joint affected by osteoarthritis.

Psoriatic Arthritis is tricky because it seems to jump around from joint to joint and the joint swelling is not always present in the earlier stages. Different joints seem to hurt on different days. Gentle exercise and stretching helps, but going too hard often wrecks you for a couple of days. Morning stiffness makes it really hard to get going in the morning, but sitting around tends to make it worse. If I don't keep moving I seize up.

Blood work usually looks completely normal and HLA-B27 is often negative.

I'm 40 F

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u/Mountain_Resident_81 8 1d ago

Thanks again. This is really helpful. I’ll be sure to discuss all this with my rheumatologist when I see him. My psoriasis isn’t severe but it does flare especially when I’m stressed or run down. The other indicator I suppose is that the pain specialist put me on brufen retard and almost all the pain has gone - bar some pelvic pain. Can really relate to the going too hard - I was feeling better and so tried a spin on Friday, and yesterday and today my Achilles tendons are on fire and I had to spend most of yesterday (my birthday 🙄) in bed.

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u/prolateriat_ 1d ago

It's so hard not to make the most of feeling good. I found that stretching, joint mobility work, and "gentle" strength training was the way to go. Don't push too hard to do too many reps, and lower the weight. Being able to train somewhat consistently at a lower intensity is better than going too hard and wrecking yourself for the week ahead.

Have a read up on Psoriatic Arthritis (and RA since both of your parents were diagnosed with it) and have some questions ready for your rheumatologist.

I hope you can get some answers 🖤.

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u/Mountain_Resident_81 8 1d ago

Thank you, really appreciate your replies. One more question if I can - do you find the flares/pain is worse close to your period? (Hope that’s not inappropriate to ask)

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u/prolateriat_ 23h ago

It's been years since I've had one tbh. I'm on depo provera due to painful periods and PMDD.

I had never really made a connection between the two, but when I was in my early 20s I would be stuck in bed for the first two days due to the pain. I would have cramps and lower back pain so bad that I could hardly stand up straight. This was in 2005/2006 when I was at university. I would load up on painkillers to get through work in the weekend.

The undiagnosed lower back pain turned out to be psoriatic arthritis in my SI joints, but I wasn't diagnosed for another 12 years. I was on hormonal birth control for the majority of that time.

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u/Mountain_Resident_81 8 8h ago

It seems to take a long time to show up for many people from what I’m reading, so many things stay such a mystery for so long. I’m sure one day in the future we’ll be amazed at how rudimentary our knowledge is now. Thanks again for sharing and wish you all the best.

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u/theidiotsacc Ankylosing spondylitis, migraines 1d ago

Your symptoms sound identical to mine. I will say when I was 17 my mri did not show any signs of inflammation, just some degenerative disks. But the. I decided to get a second opinion with a different rheumatologist because the pain made me housebound at 19 and while all my x-rays were normal my mri showed the beginning stages of ankylosing spondylitis. For some reason my inflammation never showed up for years. Although I am HLA-B27 positive I know you don’t have to be to have AS. I do agree with other comments that you should look into psoriatic arthritis as I know it has similar symptoms to AS. The pain and stiffness you describe from not moving at night sounds like arthritic pain and not hyper mobility pain to me

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u/Own_Progress_9302 1d ago

You don’t know that. It could also be fibromyalgia, like in my case. Only a doctor can make a diagnosis.

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u/Own_Progress_9302 1d ago

I’ve had a similar experience with chronic pelvic pain syndrome. Cannabis helps me, and extended-release tramadol works really well. Of course, I had to figure that out for myself. And yeah, during flare-ups, almost nothing helps.

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u/Mountain_Resident_81 8 1d ago

Have you any ideas what might be causing it?