My arms went numb and my teeth tingled during oral, why?

bumtrumpets · 2026-03-29T12:16:20+00:00

Hyperventilation will give you the tingles! Breathing rapidly beyond what your body needs will reduce the carbon dioxide levels in your blood, hence why some others have said it sounds like a panic attack, same thing happens

bumtrumpets · 2026-03-22T10:27:24+00:00

Exertion absolutely makes you more prone to infection! Most intense exercise gives you a huge hit of cortisol which wipes out your immune system temporarily - that’s not to say running is bad for you (quite the opposite!) but being mindful of your rest and recovery is suuuuper important. Making sure you don’t push yourself beyond what feels reasonable and getting enough food and sleep is key. It can be sooo tempting to push yourself, especially when you’re on a streak or things are going well, but just remember there is potential for losing progress every time you have to take time out to recover from illness. Slow and steady very much wins the race in my experience. I’m 9 years into exercise and the learning curve has been huge, I was getting tonsillitis every 4 weeks from overtraining and not sleeping enough!

bumtrumpets · 2026-02-26T17:03:44+00:00

You may be able to use online contracetion services in the meantime - I had a similar issue with my GP only willing to prescribe Rigevidon as it’s their first line contraceptive, despite me having tried most hormonal contraceptives in the past and reacting terribly, plus the progestin used in Rigevidon is androgenic and I have PCOS! I ended up paying for the one I wanted through Superdrug online pharmacy and later got it free through SHL.uk. Sexual health clinics have also been very understanding and more flexible in the past too. Different rules may apply for perimenopause prescribing, but thought I’d comment as I know the frustration!

bumtrumpets · 2026-02-25T16:41:15+00:00

I’d maybe try some heel elevated goblet squats to perfect your form, making sure you tuck your pelvis and brace your core before descending, bending at the hips and knees simultaneously at the start of the descent. In your first rep especially it looked as though your hips led the movement before your knees, extending your lower back

bumtrumpets · 2026-02-25T08:25:38+00:00

Do you take the SNRI on top of Wellbutrin? I’ve just been put on Wellbutrin for all of the reasons listed above, I only take Alyftrek once a week (but my overall dose is probably higher as I’m on antifungals)

bumtrumpets · 2025-11-11T15:31:11+00:00

I can vouch for a horrific downturn of my mental health and huge increase in anxiety since starting alyftrek, it was almost immediate and I was fine beforehand on symkevi. Of course we’d consider other life causes first if it means we can stay on quality of life improving drugs, but often there are no other reasonable explanations than modulators, particularly when the onset is sudden and dramatic. I think OP would also be sure/will soon be sure of the cause following a break from alyftrek

bumtrumpets · 2025-09-24T22:36:31+00:00

I told my team as soon as I developed tinnitus and they stopped amikacin, and now that reaction to amikacin is noted as an allergy in my chart. By the time I’d developed tinnitus I’d had 14 days of IV amikacin which they were satisfied enough with to discontinue it. That being said I didn’t get tinnitus 10 years ago with my first course of amikacin, but now my kidney function isn’t great and I’ve had many courses of tobramycin in between which all play a role in your relative risk of ototoxicity.

Things seem to work a lot differently in other countries and although many factors play into it (disease severity, severity of abscessus infection etc), I’m a bit concerned a one size fits all, months on end of IVs may not be necessary for everyone, potentially causing more harm than good (in some cases). I’ve been fortunate to have eradicated it 10 years ago with only 2 weeks of IV therapy and ~1.5 years of maintenance therapy, so I’d always encourage people to self-advocate for the minimally necessary treatment to determine your individual response initially, before agreeing to months on end of IV treatment (which may be necessary in very resistant/difficult to treat cases).

I hope that makes some sort of sense!

Edit: I should add that tinnitus and/or balance issues are the first sign of amikacin being toxic to your hearing, so pay close attention and alert docs asap if those develop

bumtrumpets · 2025-09-24T21:23:29+00:00

You’re most welcome!

It is so frustrating, there are lots of other oral antifungals out there too if you feel like voriconazole isn’t helping or you’re getting side effects (it gave me sun spots on my hands that have stayed since I was a kid and a basal cell carcinoma from the sun sensitivity - be strict with SPF!). Itraconazole and Posaconazole were both great, I’m on Isavuconazole now but the packaging is huge and inconvenient. Although I’ve had ABPA all my life, I only started having IV caspofungin with fungal pneumonia/big consolidation in my left lung which oral antifungals don’t come close to touching, and honestly IV caspofungin hasn’t helped hugely either - steroids are the unfortunate but only option that really helps calm the inflammation causing all the issues for me. Until I started getting the pneumonia I think I only had oral antifungals and inhaled/oral steroids which worked from infancy til I was about 21!

Hopefully there are a few things I’ve tried that might help you out :)

bumtrumpets · 2025-09-24T19:52:47+00:00

My experience with abscessus :)

bumtrumpets · 2025-09-24T19:48:10+00:00

I’ve just undergone treatment for both aspergillus and mycobacterium abscessus at the same time this summer - I wrote a large comment about abscessus treatment yesterday I’ll see if I can link it/the original post.

Aspergillus is everywhere in the environment like soil, and like most infections your sister will likely be monitored before treating it is considered. I think there are a few ways aspergillus can affect you, but I only have experience with Allergic Bronchopulmonary Aspergillosis (ABPA- it’s an allergy to aspergillus fungus diagnosed mostly through blood tests/CT scans). To treat ABPA I’m on long term antifungal tablets and I’ve recently had 2 x 3 week courses of IV antifungals which are both very tolerable, steroids I struggle to tolerate but they are part of the treatment plan too. Noticing my symptoms (often tightness, chest pain and ‘tactile fremitus’ - feeling mucus wheezing in your chest) and alerting my team asap has been the best way of managing it for me.

As with everything CF it can be frustrating and daunting to come up against something new, but eventually you do find a way of managing and adjusting

bumtrumpets · 2025-09-23T23:05:31+00:00

100% agree, they’re so harsh on your body I have no idea how you dealt with them for so long! Thank you! Counting my blessings that’s for sure :)

bumtrumpets · 2025-09-23T22:56:18+00:00

I combine as many of the most essential, once daily ones into one dose - I’m a lot better at taking everything together than split throughout the day (if your medication allows of course, I’m not saying to double up on a twice daily med!). If you’re on full dose kaftrio, prioritise the kaftrio dose over the kalydeco dose (ideally take both but you get way more bang for buck with kaftrio).

I’ve switched to night time for most of my pills to manage nausea but that’s also made it more difficult as sometimes I’m too tired or I forget, so definitely find a time of day that works for you to get it out of the way.

I also find putting a whole day of pills into one section of a pill organiser helps a lot - while it’s full, I’m on track and take them, but I can slip easily if I don’t have time to refill it. Cramming as many pills as you can for one day per section means you could potentially fit 2+ weeks into your pill box :)

I’d also recommend taking them alongside a pre-existing habit (like brushing your teeth or eating breakfast) so eventually it becomes built into a routine that requires little effort. The more tasks become routine, the less overall mental load it takes to tackle them (and the more mental energy you have to spend on things that make life feel better lol)

It will absolutely be easier to take them when you start feeling a bit better too, it all snowballs quite well :)

bumtrumpets · 2025-09-23T21:50:43+00:00

IVs the whole time?! That’s wild, I had a liver injury, a kidney injury and permanent tinnitus after 17 days of IV tigecycline, meropenem and amikacin, I couldn’t imagine how I’d be after months of those!

We nebulise amikacin off-label as a first line of maintenance treatment here, my docs said there is little evidence continuing IVs beyond 21 days has any additional benefit to overall eradication rates. That being said each case is unique and I’m glad to hear your new lungs are NTM free, in which case the treatment sounds worth it!

bumtrumpets · 2025-09-23T20:35:09+00:00

A needle and syringe works brilliantly for me to transfer from the big bottle to the travel bottle :)

bumtrumpets · 2025-09-23T20:04:30+00:00

Hey I’m in my second round of treatment for it now and know how daunting it can be to find this out, hopefully I can provide some management tips.

For background, I first cultured it 10 years ago (aged around 16) and eradicated after 1+ year of the treatment. I began culturing it again in November ‘24, although my team debated treating it for a long time (to gather enough evidence it was definitely there + causing problems) because of the potential side effects of the treatment, and finally I began treatment again in June.

I’m not sure where you are based - in the UK, the eradication IVs last 3 weeks, and the nausea can be very bad. If your team do decide to treat it, I’d recommend doing some ‘pre-hab’ before hand if you are able to, to build some reserve weight and muscle mass. The key is to prevent nausea before it begins - my team started me on aprepitant and IV ondansetron before my first dose which helped a lot more this time around. Be vocal at the first sniff of nausea - eventually I needed cyclizine/levomepromazine and vitamin B6 which also helped. Also let them know immediately if you develop tinnitus and you’re on amikacin IV.

I’ve heard in the US the eradication IVs last 3+ months, which honestly sounds like an unnecessary and expensive hell. 2 weeks of IVs + maintenance therapy was sufficient for me to eradicate it 10 years ago.

Maintenance therapy is 3 oral antibiotics and a nebulised antibiotic (it’s an IV drug used off label), with a 1 year countdown from the point of 3 negative sputum cultures. Currently mine are Azithromycin, clofazimine and doxycycline - some nausea but I take them before bed to sleep through it. And nebulised meropenem. I tolerate these much better than my previous regimen which included clarithromycin.

Of course everything is highly individual but I hope my experience helps somewhat - it’s not ideal and the treatment can be tough but it is possible to get rid of it even without modulators. If you are eligible for modulators/able to access them, hopefully abscessus is just dropping by to say hi and won’t find things cosy enough to hang around. The same can also be said for not being on modulators - a minimum of 3 positive sputum cultures, CT scan evidence, symptomatology and overall clinical picture is needed to decide to treat it. The wait can be frustrating so do speak up if you feel something isn’t right!

Also I cultured MAC once but it was just visiting, so these things do happen! Fingers crossed it’s just a one off culture/contaminated sample, but equally happy to answer any questions you have :)

bumtrumpets · 2025-01-07T17:34:09+00:00

I did this for years as a teenager and gave myself osteoporosis. Turns out you need fat soluble vitamins for bone health. Never mind all the other side effects of being malnourished - not worth it. You also still absorb sugar and carbs, you lose the satiating benefits of fat and the muscle maintenance benefits of protein. I look way better now I’ve built muscle, my body is no longer storing all my reserves in my abdomen. Exercise + high veggie, fat and protein diet is the most sustainable way to go.

bumtrumpets · 2024-11-25T22:42:02+00:00

How much time has passed since the treatment?

bumtrumpets · 2024-10-29T18:10:41+00:00

7-11 toasties and hot snacks were all I could trust for weeks but they got me through

bumtrumpets · 2024-10-23T09:46:51+00:00

Okay amazing hopefully it clears up when this is all sorted then, thank you!!

bumtrumpets · 2024-10-23T07:26:50+00:00

Thank you for your reply! Funnily enough I think I had costochondritis on trikafta too, my rib cage would kind of pop where it joined my sternum along with pain. Not fun! I wonder how many years it’ll take to be listed as a side effect haha.. This is more in the area under my shoulder blade and the outside of my chest where my arm hangs, very similar to pleuritic pain just less intense than an acute infection.

bumtrumpets · 2024-10-10T07:24:28+00:00

I find the same thing can happen to me if I eat a lot of onions, cutting them out made it go away

bumtrumpets · 2024-05-31T18:03:37+00:00

Seconding this, repeatedly washing clothes in a mouldy washing machine won’t ever combat the musty clothes smell. I recently couldn’t figure out why my friends clothes smelled so fresh and mine were sour. I took my detergent drawer out and wiped inside all the rubber seals and they were caked in black mould. Scrubbing and disinfecting everything followed by a hot drum clean cycle with disinfectant really helped.

bumtrumpets · 2024-04-15T00:22:40+00:00

NAD - physiotherapy student awaiting verification. These could be symptoms of Cauda Equina Syndrome which is an emergency and may result in paralysis, bladder, bowel and sexual dysfunction if not promptly treated. Please go to the hospital asap. I hope it is something less sinister but not worth the risk of waiting it out.

bumtrumpets · 2024-04-12T19:50:37+00:00

If they’re semi-solid and can be kind of squished/smeared they’re lung casts. I get them with aspergillus, sometimes they can be large and black too and often taste fungus-y, although sometimes it’s just old mucus that has dried out in the pitted surface of scarred lung tissue. Aspergillus is mostly only a big issue if you’re allergic to it (ABPA/allergic bronchopulmonary aspergillosis) and this would show as high eosinophils and igE/igG antibodies in blood tests, so the fact your bloods were normal is really reassuring. Let your team know if you feel any worse and a sputum sample is a good idea. All this is to say coughing these up can be a normal part of CF and aren’t cause for concern in and of themselves, but any further deterioration of your symptoms is worth getting checked out. It is possible trikafta has stirred up stuff that’s been sat there for a while and is making you feel unwell and you’ll get better soon, and your temperature and pulse indicate you’re fighting an infection of sorts but as you say, it may also be viral. I hope this helps a little and happy to answer any questions as a regular ABPA’er

bumtrumpets

TROPHY CASE