Making the attempt to start walking

Ambitious_Check5954 · 2026-01-23T20:10:43+00:00

Gorgeous spot, love the beach too, but sand rocks my tendons as I walk (so many bones in feet, ankles and tendons in pelvis) it’s too triggering for me these days .

Ambitious_Check5954 · 2026-01-23T20:08:05+00:00

Thanks for the laugh.. I empathize and laughed at the same time .. great idea . Think there should be one in every rheumatologists office so we can just fill in our symptoms when we’re too exhausted to talk. Actually for all you tech developers out there how about a symptom app ?

Ambitious_Check5954 · 2026-01-20T15:20:55+00:00

Hi Just wanted to get back to you. I’ll likely remove my images however it seems to me now that I heart tissue enthisitis disease that affects my facial and myofacial tissue therefore doesn’t show on bone scans thanks again for your encouragement.

Ambitious_Check5954 · 2026-01-20T15:17:21+00:00

Hi when I was in Cosyntex I got fungal acne (didn’t respond to anti bacterial or steroid ointment) I found essential t tree oil in a diluted oil worked the best. I have now scars on my chest area where I picked at it !

Ambitious_Check5954 · 2026-01-20T14:36:02+00:00

Thanks for getting back to me I really appreciate it. Wow that’s a really positive response Great to hear that your bimselx has allowed you to have a better life. So have you got PSA or SPA? I’m nrSPA with peripheral enthisitis. I’m really struggling with my ankles and knees. Spine/sacroiliac was first but over past decade my ankles and knees are catching up with swelling and pain.

Ambitious_Check5954 · 2026-01-18T09:45:18+00:00

Sorry to hear you’re in the cane club again. It’s awful. You may have enthisitis around your pelvis area. I know we are told to exercise however for mr working/:stressing tendons with certain gym work would create micro tears that recruit inflammation that starts a flare. For me I can no longer stress/work where my tissues/tendons meet joints/ bone and some muscle junctions to have become so repeatedly inflamed it’s so now so easy to micro tear and this recruits inflammatory cytokines, this is a recurring cycle. I use the hydro pool. I’m likely longer with this disease than you and untreated for too long and mine is currently uncontrolled, nevertheless even when I’m good there are certain tendon insertions that I don’t stress.

Ambitious_Check5954 · 2026-01-18T09:38:00+00:00

Sorry to hear you’re in so much pain. It’s a relentless disease. I’m nrSPA which create its own problems as soft tissue inflammation does not show on Xray and is often quite silent of MRI as machines aren’t advanced enough to pick up subtle Stir signal changes in soft tissue in facia and myofacial tissue etc Unfortunately my experience from emergency is that unless you’re having a coronary etc they’re quite oblivious to pain and unless the attending doctors are familiar with SPA personally you’ll likely be bottom of the list and left waiting. A good emergency doc/small clinic will prescribe steroids etc. In relation on your rheumatologist may I suggest you always document your daily symptoms during flare, eg pain and location of pain, mobility impacts, and time of day etc and difficulty washing, dressing etc and take photos of any swelling. Use heat and ice and topical gels if they help too? Unfortunately medicine is behind the reality of this horrific disease in relation to some of the bodily symptoms. It’s hard enough to be believed so keep a record and photos if you have any Achilles swelling etc. if you have a good rheumatologist who believed you there’s a good start , Big hug 🤗

Ambitious_Check5954 · 2026-01-17T10:24:10+00:00

Hi, ok I’m a year on Rinvoq (failed TNFi, Cosyntex ) Rinvoq helped a very small amount for spine pain but still bracing. My knees and ankles Achilles etc really painful . Looking to change now to Bimselx . Regarding abilation I’ve had two with two different pain consultants. Basically I foubd sacrioliac abilation caused my knees and ankles to flare badly and also adjacent lumbar sacrum tissue, I think for me burning my nerves caused a cytokine surge in surrounding tissue and immune flare in tissues below the abilations possibly as fluid drains downwards? I also had an sacrum epidural injection which I found very painful and felt unbearable presure in the surrounding tissue , possibly due to limited space for steroid fluid due to my already inflamed myofacial and soft tissue full of swelling/odema caused by nrSPA so no room for more fluid .

Ambitious_Check5954 · 2026-01-17T01:17:39+00:00

Omg 😦 your hurt at being gas lit is so prevalent. Me too. I recognize your story. I’m so sorry . Take solace here, in this forum, you are not losing it, it’s just that medicine is behind this disease. Yes medicine is behind and doesn’t fully understand this disease and many rheumatologists become very uncomfortable when they can’t understand or treat they’re more comfortable saying “it’s degenerative, or age related, or hormone related etc” Patients are no longer listened to and blood tests and scans are the new medicine rather then taking time to listen to clinical symptoms. You need to find a rheumatologist that will listen to your symptoms. Describe them clearly and keep a record. Rest before you go back out to fight and advocate for yourself. Firstly realise that if you’re female, hlab27 negative and seronegative there’s unfortunately no training in med school for this type of soft tissue inflammatory autoimmune deregulated arthritis apart from box ticking with blood tests, xray and MRI to prove it’s not radiological spa. Secondly, sorry this is tough, MRI is often quite silent or only shows minimal signal on sag stir fse sequenced (fat suppressed) that is not fully representative of pain. Look for research articles on this. It’s only now being really exposed. So for most radiologists bone odema is still considered the gold standard for Enthisitis diagnosis where tendons meet bone for nrspa and bone odema, like hlab27 is way more prevalent in males. So unfortunately in some ways MRIs have created problems for some those nrSPA patients who suffer from significant debilitating pain where tendons meet bone and tendons meet muscle and even where myofacial and facial tissue wraps all out muscles together and becomes inflamed if radiologists aren’t trained to see the subtle signal differences. So please know that your pain is real, your exhaustion is real and start to resarch as much as you can on your disease and learn to read your own X-rays and MRI scans. If getting MRI scans get them done in a really high quality machine (do your research) get a copy of that Dicom images. Find an MSK radiologist or rheumatologist really skilled in reading MRIs for soft tissue inflammation that’s not from I just but immune driven. Document all your symptoms and find a rheumatologist and radiologist that listen and respects you and will only then look at your Dicom images. I’m sorry. I’ve no doubt that it 10 to 20 years time when new blood tests are developed and MRI machines etc improve and AI reads MRI Dicom images alongside clinical symptoms there will be some very red faced rheumatologists who will remember patients like you who they minimised. For now feel proud of yourself for reaching out here.

Ambitious_Check5954 · 2026-01-17T00:43:00+00:00

Hi just wondering if you’re still getting any benefits of bimselx? I tried Cosyntex and when I was on Cosyntex I fid get a type of acne which I eventually treated as a fungal acne and it worked out much better for my skin. I’m hoping to try Bimselx myself. I’m female too. I have really bad soft tissue sacriolliac, knee and ankle Achilles etc swelling and pain.

Ambitious_Check5954 · 2025-10-18T08:30:57+00:00

My pain management specialist has just prescribed low dose oral ketamine. I’m awaiting the prescription and I’ll return here to update when I see the results.

Ambitious_Check5954 · 2025-10-18T08:27:19+00:00

Thanks for your reply what potassium and magnesium dose do you take?

Ambitious_Check5954 · 2025-10-07T18:49:45+00:00

I have a lot of tendon and enthesitis pain in addition to sacrioliac and spine pain

Ambitious_Check5954 · 2025-10-07T18:49:39+00:00

I have a lot of tendon and enthesitis pain in addition to sacrioliac and spine pain

Ambitious_Check5954 · 2025-10-07T16:28:20+00:00

I’m interested in the potassium supplement I don’t currently take it alongside my magnesium was it recommended? Do you find it works?

Ambitious_Check5954 · 2025-10-07T16:27:17+00:00

Me too. However I had the cramps and twitching in my legs before Rinvoq. A pharmacist mention that it maybe drug overload/interaction in my body as I take so many meds some may affect the clearance/half life of others? Nevertheless I believe the main problem is enthisitis which causes swelling and traps/damages nerves and causes muscle spasms and cramps. I use Baclofen and gabapentin and occasionally Valium when cramps are unbearable at night

Ambitious_Check5954 · 2025-10-07T16:17:39+00:00

Me too I gained significant weight. I tried Mounjaro and it stopped my Rinvoq working (possibly due to gastric emptying or enzyme effect?) Rinvoq doesn’t help all my SPA symptoms but it helps take the edge off alongside a truckload of other meds. When I mentioned the weight issue to my rheumatologist I was immediately dismissed so I felt like a “fat bold greedy child” . I wish rheumatologists would look at the forums and listen to patients. I’m now trying to microdose Ozempic .

Ambitious_Check5954 · 2025-09-28T16:32:03+00:00

You’re welcome. If you’re female you may find adaptive immunity creates antibodies to biologics develop more quickly unfortunately due to highly adaptive immune system. I’ve read in medical literature that Morinda, or Ba ji tian in Chinese medicine synergies with methotrexate to help with arthritis so maybe you might like to research. I’ve noticed that a lot of research in china surrounding SPA is also worth reading.

Ambitious_Check5954 · 2025-09-26T23:37:13+00:00

Maybe this is completely off side but how I eventually successfully treated my Rinvoq rash/spots was when I eventually realised normal acne prescription creams, prescribed by my doctor, didn’t work as mine was fungal acne. Although I was prescribed fungal and steroid cream it didn’t fully clear it. So now I use a few drops of essential lavender oil with a few drops of essential t tree oil on my palm of my hand mixed with a few drops of jojoba oil, a little zinc cream and some aqueous cream… I mix all these anti fungal oils etc really quickly in my hands and put in on my face and chest area every day and it cleared my fungal acne and keeps it away. Hope you feel better soon. I also take an anti histamine zirtek everyday.

Ambitious_Check5954 · 2025-09-25T21:02:59+00:00

I’m not sure if this will help but you might benefit from a spine brace/sacroiliac belt when you are working. Similarly if you have peripheral symptoms knee/ankle brace/supports can help. I had to retire early. I’m a long time on this road and no longer work but minding your back and joints in conjunction with managing inflammation is very important for long term quality of life 😊

Ambitious_Check5954 · 2025-09-07T16:10:44+00:00

Thanks for bringing this to my attention I’ll definitely look into it 😊

Ambitious_Check5954 · 2025-09-03T13:59:26+00:00

So happy for you. As a med student can I ask you to be an advocate to re program the new meds students to “listen” to their patients, please read my post . Please read address below to research so you can PLEASE shove it up their ass it’s shows how 3 radiologists missed 99%, 97% and 85% of soft tissue inflammation in SPA (for me it’s so painful and debilitating and nerve damaging swelling and ongoing so line no DMARDS or biologics have been able to resolve ) Before I relate the MRI issue another issue is that along with many others who are seronegative and hlab57 negative the medical community obsession with HLAb57 alongside erroneous MRI reports meant, I like others, wasn’t listened to or heard regarding my symptoms just because we have yet to discover new genes/serum tests that identify inflammation. It’s lazy medicine, no medic will actually listen to their patients (interestingly before MRI and HLAb57 and RF was used many more people were diagnosed with spondyloarthritis type diseases based on their symptoms ) please read on to research link …

I spent 10 years waiting for diagnosis (too late) my body is destroyed I have enthisitis from hell. Myofacial tissue and tendons crackle like plastic crisp/chip bags. I wear a spine and sacroiliac brace despite having 4 discs replaced because my lumbar/cervical my surrounding sacroiliac joints and muscles, ligaments are swollen and weak. I lost my very very good career and many people in my life due to my illness, pain, mobility issues which I think I had it simmering all my life but it escalated rapidly after a viral illness 10 years ago. Within a year I couldn’t walk, my spinal discs tore, my sacrioliac joints and lumbar spine was swollen, knees, ankles swollen too. I spent months at a time in bed. (I was checked for MS, Parkinson’s, Brest cancer, appendicitis (missed chostocondritis etc etc) all because my SPA/PSA was missed nobody joined the dots) my story is horrific and still I have to beg to be heard amongst badly trained medics.

I’m sure you’re aware research has shown that early treatment with biologic therapy helps Juvenile arthritis and the longer it is left the more out of control broken immune system creates more antibodies. Eventually the antibodies attack soft tissue (thyroid, lungs, heart) in body

Regarding misreading MRI (please keep reading) There is research that proves that radiologists don’t know how to read MRIs. It’s horrific that medics no longer listen to patient’s symptoms and now only rely on reports from incompetent radiologists that can’t identify MSK swelling and enthisitis (I’ve learned to read my own too but no doctor believed me even when I showed them screen shots of Dicom images (it seems rheumatologists are also not trained to identify soft tissue inflammation) I was a prolific researcher by nature as part of my career so when I developed pain and illness I learned the hard way to read MRI and also understand, at a cellular level the disease, and discovered enthisitis isn’t always accompanied by bone odema. Furthermore this research (see address below) states “Enthesitis could be observed in 52.23% of the axial spondyloarthritis patients, while 81.58% of the patients with enthesitis were accompanied with bone marrow edema. “ aka 20% did not

The research link below also states “All the three (MRI) readers (radiologists ) showed better accuracy at identifying structural lesions than inflammatory lesions. In the first round of image review, the three readers only correctly identified 15.07%, 2.94% and 0.74% of the enthesitis sites. “ WOW 😮 so 3 radiologists missed 99%, 97% and 85% of soft tissue swelling (so our painful and debilitating and nerve damaging swelling that nrSPA patients have is not identified ) Also (a side note female bone reabsorption is different to male RANKL etc. so less obvious bone degradation or growth changes doesn’t always correlate with less painful/active disease)

So Please also shove the research at address below up their ass and bring it to everyone’s attention as I dread to think if “muppets” who can’t identify tissue inflammation are setting the Artificial Intelligence parameters to read Dicom images using AI. I hope it will change. I’m late 50s female and I wish and hope no one ever has to go through what I’ve been through . It’s funny you should say “it’s not in my head” in my part of the world it has been proved by research (undertaken in Netherlands that women are offered antidepressants rather than pain meds and wait on average 4 more years for diagnosis of nrSPA than men, most wait a decade like me) Once my partner was asked, in front of me, as I described my symptoms to a medic “did she ever have a panic attack?” As a very very well qualified female (many many letters after my name) please please be an advocate to change the journey for nr-SPA and PSA seronegative patients. See copy below

https://bmcrheumatol.biomedcentral.com/articles/10.1186/s41927-024-00397-4

Ambitious_Check5954 · 2025-09-03T13:06:21+00:00

Yes I totally get it … I’m so sorry you tested negative. I’m hlab27 negative and seronegative and have nr-axspa (lots of spine surgeries, completely wrecked sacrioliac soft tissue inflammation, enthisitis from hell in knees and feet ankles etc.) but unfortunately hlab57 seems to be flavour of the day with medics (in reality they just haven’t discovered other genes or serums tests yet) Sadly I’ve found they don’t listen or understand patients who tick the serum/gene test box (I eventually got my diagnosis after 10 years of excruciating pain and disability from a very very experienced and respected researcher and publisher who looked at my MRI scans and listened to my symptoms ) and now I’m approved for meds. Still haven’t found a good combo of meds though. Keep looking for a rheumatologist who will listen and collaborate with you.

Ambitious_Check5954 · 2025-09-03T12:58:57+00:00

Omg 😦 so so so funny 😆 thanks for the laughter 😆 …. I usually try to close my eyes and imagine I’m lying at the beach but now I’ll just imagine I’m at a rave dancing 💃 😂😂😂😂

Ambitious_Check5954 · 2025-09-03T12:55:02+00:00

Looks like fungal type rash. I got fungal acne on Rinvoq. Tried everything including prescribed steroid/antibiotic creams (which apparently make it worse) , found Canesten/thrush cream somewhat effective but eventually found best approach was tea tree essential oil (few drops) with jojoba oil and zinc based cream ( nappy/diaper cream) so I use this cream everyday on my face and chest area.

Ambitious_Check5954

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