Hello everyone, it was my daughter’s 18th birthday yesterday and at her request, I baked a dark chocolate sponge with a filling of Biscoff spread and strawberry jam, decorated with splodges of unicorn 🦄 icing, mini smarties, sugar stars ⭐️ and Biscoff biscuits. In true Mrs Cropley style, I went off piste and chunked up the top layer of sponge to make it look a bit different - which it did! My daughter said it looked like a “messy bun hair style”(!) A huge compliment to my creativity! 😂 It did taste rather nice I must say! Please do enjoy a slice, it is very rich and very naughty! 😋
Anyway, on another note, I’m looking for a bit of guidance. For the past week, by about mid morning after I have been up for several hours pottering about, I have a sudden onset of whole body stiffness with pain. I’m like the Tin Man - my gate changes to a creaky shuffle, I find it difficult to bend down, reach out etc etc: I take some paracetamol for the pain and after a few hours I become less stiff. The same happens the next day. Any ideas?
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Happy Birthday to your daughter. The cake looks amazing. I would have posted a photo of the featherlight sponge with Chantilly cream and strawberries I made my husband yesterday but he has eaten it all 🐷🐷 xxx
Of course, your title suggests baking with biscoff should be avoided ... Not admiring it - it's Lent and I'm on a strict diet to try to deal with the lockdown gain (first) and then the rest of the weight gain in the last 6 years! So I'm trying not to look ...
Thanks for the link Pro - I’ll keep an eye on symptoms - would I report this into Neurology or Rheum or both? At least the baking keeps my mind off things and keeps me moving around the kitchen...albeit at a shuffle! Yes the cake...a tad naughty...later on I’m making Biscoff cheesecake (we’ve gone a bit Biscoff-tastic here!!) can I tempt you to just have a tiny peek of it if I post a pic later?! 😄xx
Never heard of it - can't eat the biccies anyway as I'm allergic to wheat. They sound a bit like Spekulatius plus!
If you are under neurology then they would be more appropriate I'd think as a start, sounded very neuro to me just from the description. But both - it might not be Tin Man syndrome ...
Thank you so much EJ for your thoughts and prayers - I hope I get some answers soon. I did think of you when I posted the pic - so I am glad you have seen the cake, it is for you too. Enjoy! 🎂💐❤️💐
How odd - sorry can’t offer any advice but sounds very painful- the cake looks wonderful - Happy 18th Birthday 🎂 to your daughter - oh how I wish I could have a slice 😋😋😋💕
Thank you for birthday wishes SV - it has been a cake-tastic weekend! Her friends surprised her at college with a huge, multi-layered, homemade fresh strawberries and cream, Victoria sponge and then hubby and son made a Biscoff cheesecake with white chocolate blended into the mix - my larder is swamped with cakes and goodies! Wish I could share them all with you 🎂⭐️😘🤗😘
As mentioned by PMPro, Stiff Person Syndrome is often symbolized by the Tinman. This is why I refer to my brilliant neurologist as the Wizard.
SPS is a neuro/ autoimmune disease that is about 1:1million incidence rate and 1:1-1.6 prevalence rate globally. So, it is very rare. Hard to get diagnosed, harder to get proper treatment.
Most often starts insidiously as back pain, either cervical or lumbar. Many falls for unknown reasons early in disease can lead to anxiety and misdiagnosis of social anxiety. Runs with Lupus, RA, Type 1 diabetes, thyroid disease and vitiligo. Often accompanied w/ anxiety and depression because of QOL issues. misdiagnosed as MS or Parkinson’s.
Feel free to ask questions or go read my previous posts. There is also a good FB group for SPS or one on Rare connect that are specific if you want to learn more. I have found that there is a paucity of information. Much of the “official” sites are just regurgitation of the same decades old sterile info. When I went to the Uni hospital for a specialized test (mind you, I researched credentials on the attending and fellow who would be doing my tests that day). The Professor doing my test was very kind and attended to my comfort well. But, dog gone if he didn’t seem like he was as thick as a bag of rocks. He had never actually seen a case of SPS but had written a chapter on it for a medical textbook. He diagnosed me with global muscular weakness (not related to age muscle loss).
There are other more informative groups but this group, right here, is the very best!!! If I can help in any way let me know. 🌷🍀😘🧠❤️
Thanks so much for the info, I am so relieved I can take a shortcut past all the duff stuff and get sound guidance and advice right here! I realise now why you call your Neuro the “Wizard” - I thought it was because he was magical in getting the right diagnosis and treatment for you! 🤦♀️ 😂 It’s great that you have him on your journey on the yellow brick road!
Incidentally, I have a Neuro appt on Friday, so I’ll mention these new symptoms to him and see where we go. I’ll keep you posted! 👍⭐️🤞🦄 🦓 🤗😘🤗
Scrumptious Cake Horsewhisper, Looks Incredible - Chocolate Heaven 😇👏Yum 😋 your Daughter will appreciate you even more.....18th Special birthday 🎂
Thank you for sharing....I hope you soon get some Relief....I do like the Expression - Yellow Brick Road 💛
I myself, do experience Stiffness, exactly as you say. I actually never even knew about this SPS, reading the link *PMRPro* and the detailed description *DRunnerChick* (thank you 😊)
has given me further insight
🧠🧐🤔💡🌈🤗
I stretch it out, place a Lidocaine plaster on my back, and try not to stay in one position too long....muscle spasms with jerking moving especially at night in bed. I had no idea, I will discuss with my Rheumatologist to sign post me xxx
Thanks so much! Glad you liked the cake! 🎂😋That’s what I love about this forum - so much knowledge and lived experience shared for the benefit of us all. Love and hugs back to you! 🤗😘🤗
Another thing, if you have spasms, when do they happen, when at rest? When doing something? When asleep? Some things happen only when you use the muscles, others only at rest. Still others never when sleeping. So, since you still have a couple of days...
Thanks so much D🏃♀️! A very helpful list of pointers, that will no doubt help Neuro with his investigations. I have issues with facial tremors, balance, blurry vision and swallowing (as well as nighttime choking episodes that rouse me from sleep in a panicked state of unable to breathe or swallow, sometimes coupled with full body shaking) in addition to the recent, sudden onset of bouts of torso and limb stiffness and debilitating pain. In the last 6 months I have had a normal MRI of the brain and an abnormal EEG (but not epileptic or have any evidence of seizures) Do you know if there is a connection between an abnormal EEG and SPS? The appointment with Neuro on Friday is to review EEG results and update him on new symptoms. I realise that this mixed bag of symptoms and test results can point to a range of conditions, it’s certainly useful for me to know what else can be considered. I’ll put together my notes and let you know how I get on! Thanks again 🪄 🧠💫🙏🥰
Do you know what kind of abnormal waves you had?(or during sleep, hyperventilation etc). Seizures can be connected to the GAD-65 ab, which is the primary one they look for. I know there are others with SPS that have abnormal EEGs but not in any discernible pattern. I have found a lot of useful information on the FB forum because people post just about any question. Unfortunately, it is a public forum so I lurk and answer general medical questions but don’t get personal there. But let me see if I can find a more specific answer to your question before your appointment.
So kind of you to help with this! I don’t know what kind of abnormal waves showed up - I suspect this will be covered off in the appt, so I’ll be able to let you know after Friday. Whilst I was all rigged up in the EEG room, they did leave me for about 15 mins with my feet up on the bed with the room darkened, so that I would be encouraged to nod off, which I did briefly, and I managed to have one of my choking episodes, albeit a mild one - which was pretty timely! Maybe abnormal waves were recorded then...or maybe at a different time during the study...I’m intrigued to find out!! Hope this helps! 🙏🤞⭐️
Hi D🏃♀️, had my Neuro tele appt today, not with the doc I was expecting but with a chappie whose expertise and special interest is sleep disorders. He introduced himself and explained that the nighttime choking episodes was what he wanted to discuss today and all the other stuff he would get my usual Neuro chap to get back in touch. I looked him up after my appt and he is quite a leading light in his field. So! We had a really good discussion and he said I had “Non-REM Parasomnia”. The abnormal EEG is nothing to worry about and for me to improve on my sleep hygiene and bedtime routines. He didn’t want to suggest any medication at this stage - and for me to try to alleviate these episodes naturally. So at least I got an answer and some reassurance, which feels really good. . I’ll cover off the body stiffness and pain in my next appointment with usual Neuro. - I’ll keep you posted! 🤞😘🤗😘
Sorry been MIA, just red lining with no margins. I’m glad you had an overall good visit and pretty good results too.
I actually have to go back and look up all the studies/tests/exams and their results that I’ve had in the last 4-5 years. 🤯🙀😳. I do recall my EEG was normal and I never hit sleep, just a deeply relaxed state. I also had a sleep study. I had a higher number of pauses than average but not significant length of time during sleep. I don’t recall all the specifics but now we also know that I have silent reflux.
I have taken extra classes on sleep hygiene so if you need help, just ask. I’ll help if I can. Happy and healthy 💤
No worries! It’s really kind of you to share your knowledge and info - so reassuring to know someone who has gone through something similar, although I suspect it has not been very nice for you to have gone through it. Sleep specialist Neuro said that the Non REM parasomnia is very rare so I think I can start farting rainbow glitter now?! 🌈 🦄 😂 Hope all good with you this weekend 🤗😘🤗
"He had never actually seen a case of SPS but had written a chapter on it for a medical textbook."You couldn't make it up could you? No wonder the test books often bear not a lot of resemblance to reality!!! Even in something as common as PMR ...
No worries! Thanks everso - Yes D🏃♀️ was very helpful and I’ve got stuff to talk about at next Neuro appt. This forum is just fab for sharing info and getting a steer in a different direction. The quest for answers continues! 🙏👍🤗😘🤗
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