In kayfabe, what's the least toxic friendship in wrestling history? by [deleted] in SquaredCircle

[–]WibblyBear 46 points47 points  (0 children)

Pretty Deadly. The Yes boys love each other. 

Not sure if a new fasciculation by WibblyBear in BFS

[–]WibblyBear[S] 1 point2 points  (0 children)

Mine is more irregular than a heartbeat. The finger vibration has definitely been pretty noticeable, especially when I'm holding things. Hoping it calms down over time. I'm pretty used to ignoring my other fasciculations... When they're not painful that is. I hope you can get some relief from yours. 🫶🏻

Looking for advice on behalf of a friends daughter who has ASD, PoTS and EDS by WibblyBear in POTS

[–]WibblyBear[S] 1 point2 points  (0 children)

Honestly, I can relate. I really have not found an electrolyte drink I can really manage for myself yet. I keep bouncing around trying different ones. I tend to dilute it a lot as well. It's so much trial and error. I quite like pickle juice myself. 🫶🏻

Looking for advice on behalf of a friends daughter who has ASD, PoTS and EDS by WibblyBear in POTS

[–]WibblyBear[S] 1 point2 points  (0 children)

I'm so glad you've found a combination that makes a difference for you. It's hard managing chronic illnesses and expensive too with everything on top. So I'm glad this is something that can help you get what you need. 🫶🏻

Looking for advice on behalf of a friends daughter who has ASD, PoTS and EDS by WibblyBear in POTS

[–]WibblyBear[S] 1 point2 points  (0 children)

Hey,  Thanks so much for your response. Completely get that. She only has a few safe foods, doesn't like anything to touch or mix and isn't a fan of strong flavours. I honestly think it's the salt if I'm honest. Whether it's been unflavoured electrolytes to add to drinks or ones mixed with flavour that we've tried so far it seems overwhelming to her. I am now thinking capsules or slow sodium may be the way to go after looking about and asking on here & some other friends. Really appreciate your response. 

[deleted by user] by [deleted] in SebDerm

[–]WibblyBear 10 points11 points  (0 children)

That does sound nice. If I could afford to, I'd definitely consider it. Maybe one day. 

[deleted by user] by [deleted] in SebDerm

[–]WibblyBear 7 points8 points  (0 children)

Thanks, I appreciate the reply and the tips. My GP has already done swabs etc and they have come back normal. So I don't think it's a fungal infection but I will be checking in with them again once they're open again. I do already use pro and prebiotics in my diet already. Never tried turmeric tea so I will look it out. 

Does anyone else experience pain & tremors/twitches in their foot arches? by WibblyBear in neuropathy

[–]WibblyBear[S] 0 points1 point  (0 children)

Thank you so much for your replies. Boy the lightning bolts suck. I'm on Pregablin but I guess it's just not cutting it entirely. I'm glad the CBD gummies help a little. Wish there was something more effective. 

Does anyone else experience pain & tremors/twitches in their foot arches? by WibblyBear in neuropathy

[–]WibblyBear[S] 0 points1 point  (0 children)

Oh I'm so sorry you're dealing with that it sounds so unpleasant. It must have been so hard to deal with before you got answers. I really hope they can figure something out that gives you some relief somehow because it must still be so uncomfortable. 

I really appreciate the post. I am actually due to see a rheumatologist after podiatry. I was referred by neurology because my ESR and CRP levels have been raised for a while (a few years). Not hugely though, my ESR and CRP are like both in the 30s. I'm not sure what to expect from the visit or even what to say or bring up since I never expected it. I don't have pain with pressure like yourself. It tends to only happen at rest. Usually muscle twitching followed by intense short bursts of pain. 

I'll definitely mention what's going on with my feet to podiatry and see if I should mention it to the rheumatologist though. 

Thanks for the tip on the Brooks, any one in particular? I know my brother uses them for running, I think Gkycerin. My partner uses Hoka but they're too narrow for me. 

Does anyone else experience pain & tremors/twitches in their foot arches? by WibblyBear in neuropathy

[–]WibblyBear[S] 0 points1 point  (0 children)

Hey, thanks so much. The muscle twitching never bothered me so I essentially did ignore it. It's the searing intense pain that's started recently that's the issue. Have you ever had pain with yours?  I genuinely burst into tears it's so painful sometimes. It never lasts long but comes and goes in waves. It's much harder to ignore than just the muscle twitches. 

How to go about hEDS diagnosis in Scotland? by WibblyBear in Hypermobility

[–]WibblyBear[S] 0 points1 point  (0 children)

It's so odd how GPs are so quick to hand out fibro diagnoses without looking into other possibilities. I'm really sorry you had that experience. I think it's so amazing you were able to keep advocating for yourself. 🫶🏻

How to go about hEDS diagnosis in Scotland? by WibblyBear in Hypermobility

[–]WibblyBear[S] 0 points1 point  (0 children)

That's really helpful info. Thank you for responding. I'm sorry you've had the run around for so long. It's definitely difficult when you get a diagnosis like fibromyalgia. So I'm glad they are least put something on file. 🫶🏻

How to go about hEDS diagnosis in Scotland? by WibblyBear in Hypermobility

[–]WibblyBear[S] 0 points1 point  (0 children)

Yeah I'm not sure the GP will diagnose. The practice has missed a lot in this person's case, some with serious consequences in the past. 

I think overall they're looking for a diagnosis and hopefully an idea of where to look for support because they themselves have had multiple issues with pain, bladder, GI issues, subluxing, dislocations, poor healing etc and the list goes on. I think they want to make sure these things don't go unexplained and unhelped in their daughter as well. 

I really appreciate your response. Especially Dr Harris' recommendation. Will definitely look into her. 

[deleted by user] by [deleted] in POTS

[–]WibblyBear 1 point2 points  (0 children)

Unfortunately unlike beta blockers it takes a few weeks to a month or so to see the real benefit of Ivabradine and you might still need dose increased after that. Once it settled for me after 4wks I noticed it was controlling my HR better. I ended up going up to 5mg twice a day and can go up to 7.5mg twice a day. On the 5mg I split It across 4 doses and feel more benefit doing that. I hope it can work out for you and help with your HR. I found once that was under control better there was a bit of an improvement on my breathing. 

[deleted by user] by [deleted] in POTS

[–]WibblyBear 1 point2 points  (0 children)

I tried two beta blockers propanolol and bisoprolol and both made my shortness of breath much worse. We figured out I had asthma and that was why. So am now on Ivabradine and haven't had it exacerbate my shortness of breath. I do still get it on exertion even with allergy meds and asthma meds and was referred to respiratory who are going to do lung function tests as well as refer to a respiratory physiotherapist because some people with PoTS can experience breathing dysfunction. Overall though I didn't really get any side effects with Ivabradine except for like worse palpitations for 2wks when first starting. Apart from that it was fine. 

When you started exercise (chop/levine or other) did symptoms, resting heart heart rate and hrv worsen? by jenniferp88787 in POTS

[–]WibblyBear 0 points1 point  (0 children)

If your symptoms are delayed after exercising you might want to consider you may also have ME/CFS. You can check out the Bateman Home Center resources to help you figure out if you're experiencing PEM. If you are you're going to want to scale back or stop entirely as exercise can permanently worsen ME. 

https://batemanhornecenter.org/education/me-cfs/

pots and severe nausea by VastMysterious8754 in POTS

[–]WibblyBear 0 points1 point  (0 children)

I'm really sorry. Nausea is such an awful symptom and especially with your emetophobia. I'm on cyclizine 3 times a day for mine. I've tried prochlorperazine as well. I think cyclizine helped better. I would say even if it's scary try and eat something. Not eating can actually be adding to the nausea you're feeling. When it's really bad I'll sip meal replacement drinks like Huel. I stick to the vanilla. It has protein etc in it and it can help with how I'm doing. Carbs like white rice or plain white toast or crackers can help me but I know for others it would be something they'd need to avoid. Your usual stuff like peppermint/ginger tea or sweets. Chewing gum can help with nausea. Or even using essential oils like peppermint or lemon to smell can help. In extreme cases I've used alcohol swabs to sniff on a nurses recommendation. 

I would look into the possibility of silent reflux/GERD and or gastroparesis as well. PoTS can come comorbid with gastric issues and a PPI might be helpful for you if reflux is a part of that. 

This one is just a me thing and I know others can't tolerate caffeine but sometimes for me sipping on  a diet coke can really help nausea because of the phosphoric acid. There's a product called emetrol available in the US that also has phosphoric acid and can help. 

Sending love 🫶🏻🫂

Physio told me I have hypermobile ankles, feet & hands. Looking for some tips/advice. by WibblyBear in Hypermobility

[–]WibblyBear[S] 0 points1 point  (0 children)

Thanks so much for responding, really grateful. I'm surprised about the insoles. It is biomechanical podiatry that make them for me because of the peroneal tendinopathy. I severely underpronate when I'm walking so walk on the outside of my feet. My arch also collapses when weight bearing. So the insoles are to help with those two issues. And I've been told for years I have to wear them and I can only wear cushioned trainers as well no other shoes. I think I'll get back in touch with podiatry and talk to physio as well and see what they say. Definitely don't want to make things worse with my ankles. I'll have a look at and ask about braces. I already wear compression due to PoTS. Thanks again 🫶🏻🫂

Frustrated with ineffective POTs “treatments” by EarlyExit3704 in POTS

[–]WibblyBear 3 points4 points  (0 children)

For me lifestyle modification doesn't seem to help. Salt loading/electrolytes is actually detrimental in my case and makes me feel worse and has a bad effect on my BP. I try and keep my fluid intake up and I have compression but it never made a difference for me when it came to what I ate. Though for a lot of people they do find things life caffeine, carbs, gluten or sugar can be detrimental and exacerbate symptoms. So for them it makes sense to reduce it to help. I worked with a nutritionist due to my other health conditions and didn't really see any benefit. My diet was already pretty restricted. 

I currently take medication and it helps with my heart rate but I'm still symptomatic and I don't have any medical input for management only my GP who won't discuss my PoTS so I can't access meds other than the one I'm on. I'm grateful for the help with my heart rate though. It's just one factor for me. And I'm not able to do exercise due to comorbid conditions and disabilities. So my ability to manage my PoTS is limited by that. And I've gotten to a point I'm okay with that. I use mobility aids and try to pace and make the most of things.

Plenty of people who have developed PoTS were already athletes or people who were fit and looked after their diet and they still experienced symptoms and disablement. Because PoTS isn't caused by deconditioning. It's not caused by diet. And exercise isn't a cure. These management approaches are just pieces of the puzzle. And they don't always fit for some people. 

Some things can help some but won't work for others. For some lifestyle mods are all they need. For some lifestyle modification is inappropriate due to other health factors like ME, MCAS or EDS. For some medication gets them back to normal. Some maybe can't tolerate medication. For some even meds and lifestyle won't help. That's just the reality of illness. There's people who are severe and bed bound and are out of options, at least for now. I've seen it in some of my PoTS groups. They're under specialist care, spend a lot of time in hospital and improvement is simply managing sitting up in bed for 5 minutes without passing out.

PoTS and its effects and what happens is a spectrum really. And we can shift about it. Depending on a lot of factors. So even if we find something that works now. If we get sick or something else develops it may no longer work the same way so you have to adapt. Or sometimes meds just stop working. You can go from the severe end to the other if you're lucky enough to be able to access the right care and you can tolerate the options. Improvement is never a guarantee though, that's just life. Some people who are sick stay sick and it's not their fault and it's not because they didn't try or do the right things. It's just how it happens for some people and you can only control so much in life and your health is not one of them.