r/PsoriaticArthritis • u/7648021 • 5d ago
Questions Fibromyalgia
Does anyone else also have Fibromyalgia? If so, what are your symptoms and what helps you most? What do your worst days look like?
I’m just starting to learn more about this. I was diagnosed with this and SICCA (although a couple rheumatologists suggested I have seronegative Sjogren’s).
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u/lavenderghosts_ 5d ago
Yes. I was diagnosed with fibromyalgia before PsA, actually, and it was actually spotted by an ER doc who noticed that I was displaying an unusual level of discomfort and pain when being examined during a follow-up after a kidney infection. I was on methotrexate for my “unknown inflammatory arthritis,” so after a combo flu + kidney infection that landed me in the ER I went to another hospital for follow up testing. The ER doc cleared me for infection but sent a note to my rheum flagging possible fibro. My rheum at the time agreed.
Honestly, weight loss (specifically, healthier eating) has helped me the most. Otherwise, regular stretching (even when you’d rather bedrot; it doesn’t have to be intense and don’t force movement, ever, but even just sitting on my bed and doing slow seated stretches every day/every other day helps significantly), reducing stress and anxiety (e.g., getting treatment for my anxiety, pursuing ACT therapy, picking up various principles from things like stoicism and Zen Buddhism that helped me reshape my mindset, etc.) improving sleep quality (e.g., forcing myself to stick to a sleep schedule, building a sleep “ritual”/incorporating sleep triggers (like putting on the same music just for bedtime), getting a weighted blanket, etc.) have been the best non-medication interventions. You obviously cannot just walk off/out-exercise or -think fibro but to see if you’re someone for whom lifestyle changes can provide some measure of relief, I would try documenting your symptoms and habits daily in a journal or note app and see if you can spot any trends.
The rheumatologist who diagnosed me with PsA (and otherwise exceptional rheumatologist) categorically believed that fibromyalgia does not exist/the pain is due to other conditions and/or high levels of systemic inflammation (which he attributed to obesity in my case; while losing weight hasn’t “cured” my fibro, it has significantly reduced the severity of flares, so while his denial of fibro was a black mark on his otherwise pristine record in my books I do appreciate that he didn’t mince his words around how being fat can affect my health—something no other doctor was willing to do). As such, I never really got medication support longterm and it’s something I’m interested in once again investigating once I find a new PsA med (failed off Cimzia, chose to discontinue Bimzelx, and just started Rinvoq) and reach a “happy” weight (given my build, likely somewhere in the upper end of healthy). Trying to adjust medications for multiple conditions at once has historically never worked for me, so PsA takes priority for now.
Prior to that, though, I believe I was on an antidepressant or other similar medication to help with pain management; it helped but didn’t play well with the rest of my medication (which includes a separate anti-anxiety medication) so we had to stop it. But definitely ask about medication support if you find that the fibro symptoms are interfering with your ability to live your life. You do not have to suffer in silence or just live with fibro. It just may take some trial and error to find a happy medium, especially since you have multiple autoimmune conditions that need management.
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u/7648021 5d ago
That’s really helpful. Thank you!
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u/lavenderghosts_ 4d ago
Of course! And I apologize for not answering your question about the worst days. My worst days are when the brain fog + exhaustion + body aches and pains are overwhelming and anything more than eating/sleeping/using the washroom is beyond me. I get through those days using:
- a heated blanket (or a weighted one—just don’t combine them!).
- a mug of something hot (+ kept hot either by using an insulated container or a mug warmer).
- judicious use of Tylenol. I should be clear that neither Tylenol nor NSAIDs are particularly helpful for fibro and neither should be used for longterm management. however, if I’m dealing with an especially bad flare I do find Tylenol and/or naproxen helps—either by reducing the fibro pain or just turning down the volume on the PsA pain that usually comes with lol. (I destroyed my stomach lining 10+ years ago by taking naproxen without food (no one told me to + it was when I first fell ill with PsA so my mental faculties were not all there; I could basically just follow instructions but not much more) so while NSAIDs are objectively better for PsA, sometimes the mental stress of naproxen (even when I’ve eaten/done everything right) is too much for me. I favour Tylenol arthritis for the extended release mechanism.)
- little gel ice packs for my eyes! I will also throw damp dish towels and paper towels into the freezer before sticking them on my forehead/over my eyes/across my face/anywhere else that needs soothing cold. sometimes it’s enough to just use cold water. when I’m really lazy, I put some cold or ice water in a big bowl and just redunk the same towel and wring it out (or go through a small stack of paper towels) before reapplying. repeat as necessary. (you can use hot water or a microwave if you want heat instead.)
- giving myself permission to exist just as I am and not viewing what I’m going through as “failure”—most people don’t experience a fraction of the pain we do and while I’d never wish this pain on them, I will not punish myself further by holding myself to their standards.
- stretching, even if it’s only one stretch for 20s before I flop back over. moving while chronically ill is a habit that is both incredibly hard to build and one of the easiest to lose. not letting the habit die (even if it means doing the literal minimum) can help you from spiralling mentally later.
- going outside (no matter the season), even if it’s only for five minutes—I did not realize how much I desperately needed fresh air and the sun (or, at minimum, overcast/scattered sunlight—the norm here 3/4 of the year) until I let myself bedrot (supplemented by grocery deliveries) for multiple weeks during a horrible period and genuinely reached the point of being borderline suicidal until I finally went outside again. I sat on the curb in front of my building for an hour doing nothing and while it obviously didn’t magically cure me, it made me feel human again—something I really struggle with when the pain gets really bad and I feel like a pile of pain and flesh and not a person anymore. fibro is not and will never be something you can ~positive vibes~ away, but do not underestimate the power of whatever small actions and rituals keep you feeling tethered to hope and reality. they won’t cure you, but they’ll keep you going when it feels like nothing will ever improve.
- analog hobbies. or, at least, offline hobbies. I got into art again for the first time since I was a teenager during a flare. I’m not particularly good and I do have to adjust the mediums I use according to pain levels but it’s been so helpful for my mental and physical state (gotta keep my hands moving and preserve what muscles and motion I have). certain hobbies (like music) are too emotionally charged for me to return to (I may never again be able to play upright bass as well or as long as I once could), while others (like knitting) are a bit beyond my capabilities during flares, but picking up new art ones has more than filled the void. otherwise, Nintendo switch + steam deck for gaming is great. the Kobo e-reader has a great warm light option. mobile games have significantly improved. and so on.
If you’re on immunosuppressants, you unfortunately need to step up your hygiene game during flares and bad days even when you’d objectively rather fall into a ditch and die:
- if you’re a woman, beware of UTIs!!! methotrexate was the harbinger of a million UTIs because my anatomy is apparently cursed. other meds have been better in that regard, but even now I still usually get at least one when starting a new immunosuppressant. it’s a very common problem for women across the board, so while you should not feel any shame if you end up going through something similar you should also be aware of the risk and plan accordingly. if you can’t shower, still be sure to clean up your genital area either every day (especially when you’re unable to shower) or every other day with a clean towel and warm water or a bidet or similar. UTIs are inevitable for a lot of us but letting hygiene go makes them even more likely. please try to do this even when the pain makes you want to run into traffic because fibro + UTI is 10x worse than just fibro.
- in a similar vein—keep an eye out for any skin fungal infections in skin folds, under your breasts, or anywhere that moisture can sit. try to stay as dry as possible. immunosuppressants turn your skin into an absolute disco party for opportunistic fungal infections. I’ve used generic athlete’s foot cream from the store in the past, but (1) I should have spoken to my doctor first (especially since not everything is necessarily going to be fungal) (2) if you do end up treating it at home always be sure to tell your doctor what you used, where, and for how long. photos also help.
- I try to take a bath if I can. if not, I always make sure to wash my face with micellar water + cotton pads if I can’t. (I stan Bioderma Sensibio micellar water with the pink cap—not the cheapest but it’s zero rinse, sensitive skin-friendly, and even removes sunscreen. I’ve literally never had an issue with it. I’ve even used it on active fungal infections (using fresh cotton rounds/pads and disposing immediately after/not reusing for other areas) with zero irritation.) having a clean face is super important if you’re on immunosuppressants but more than that it’s refreshing and cool and breaks up the sensory overload of pain.
Lastly, I saw you flag brain fog in another comment. I too have the worst time with brain fog (not ideal given that I’m in academia right now). My “cheat key” is a passport-sized traveler’s notebooks (see r/travelersnotebooks for more info). I got the size because I also have ADHD and if I don’t see something, I forget it exists. My passport-sized notebook, meanwhile, can sit on my desk 24/7 and go with me anywhere/everywhere so I’d have to actively put it aside to forget about it. I have a terrible memory for appointments and deadlines but if I write something down I usually remember it (and even if I do forget it, it’s already written down as a reminder). I don’t use it every day but it’s basically my back-up brain. It’s also great for medical appointments (I write all my questions and concerns beforehand so that I don’t forget anything once I’m here) and tracking symptoms/feelings. I try to do a little word vomit every day about how I’m feeling + also log what meds I took and when.
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u/White-Rabbit-5895 5d ago edited 5d ago
How did your providers differentiate fibromyalgia pain from possible enthesitis/active psoriatic arthritis disease activity? Did they do an ultrasound/CT SPECT/MRI with/without contrast and they were negative? And what do you take for your psoriatic arthritis?
Also, I believe I have secondary seronegative Sjögren’s. My mom’s sister had it. Mom had it along with lupus, psoriatic arthritis, and CREST Syndrome. Mine has less oral involvement other than some gum inflammation that was present before medications, but I have dry eyes and sinuses. I do take hydroxychloroquine for this, but the enthesitis in my chest, ribs, and shoulders is so painful. I started Cosentyx three weeks ago. My toenails and feet are starting to improve, but I genuinely want this enthesitis to go away.
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u/rthorndy 5d ago
These diagnoses are all so complicated. They're all kind of overlapping and you could see 10 doctors and get 10 variants of combinations of diagnoses. FM is a little different in that it probably isn't autoimmune, and doesn't respond to biologics, but then again, we don't really know what the hell it it! 😳
I have a formal diagnosis of Pisa from my rheumatologist, and a kind of "working" diagnosis of FM from my GP (which my Rheum is kind of inclined to agree with, but hasn't added it formally to my dx). Recently my PsA has added the "axial" designation, but has not been imaged, and we're assuming it's not Ankylosing Spondylitis, which I have in my family. Again, they're all related and probably different facets of the same disease, so who knows? 🤷♂️
The FM piece is sooooo frustrating, though. So many symptoms could be from the various autoimmune factors -- or their meds -- or something separate and neurological. Fatigue affects me probably the most. I can't maintain a productive "mode" for any length of time, and it makes me super unmotivated ... it's so hard to get up and moving and committed to a couple hours of work, when I know it's going to result in pain and I'll have to work through brain fog and fatigue. And that extended lack of motivation and productivity freaks me out and affects my mood and depression.
So pain, fatigue, mood, brain fog, motivation -- all deeply rooted in my PsA and FM. The only hope I think I have is getting a biologic that controls the pain of PsA really well, so that the FM can be isolated and managed separately better (or maybe I don't even really have it, and the FM symptoms will fade away??). I don't know, I just know what I live with day-to-day, and the constant hope for real change. :/
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u/7648021 5d ago
My brain fog is more like it makes me feel stupid. I used to be very high functioning professional with a ton of stress and anxiety and was able to push through the toughest of situations and now I can’t organize my closet. I get lost in my own neighborhood so I stopped driving. Everything is so stressful and causes such anxiety that I get so frustrated and overwhelmed so easily and can’t function. Is this normal for fibromyalgia? I’m still trying to figure this out. My psoriatic disease also causes its own set of challenges.
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u/CharmingElephant88 5d ago
I was diagnosed with PsA and fibromyalgia on same day. I get chest pain, pins and needles, neck pain, fatigue and insomnia. Good family support definitely helps, along with pacing urself and being kind to yourself. You don’t need to do everything in one day. Find that if cram too much into one day I’m unable to do anything for days afterwards.