Chronic pain
Don’t know how much longer I can work?
sweetkitty · 25/05/2021 16:41
Having a very low day today. I work full time, I’m an ASN teacher I love my job but it’s pretty full on. I’ve worked part time in the past but to be honest part time can actually be harder as you end up doing full time paperwork and just don’t actually teach 5 days a week plus I always felt like I was playing catch up for the days I was missing. Plus it was hard for the children not to have the one teacher.
I’m in tears with the pain today, I feel like I’m given everything to work today there’s nothing left. By work is really good in that there’s not a work until 5pm culture and I could be out the door at 3pm everyday if I wanted to. I come home early most days have a nap, then get up and do some work in the evenings. I’m not sleeping well because of the pain just now either.
Maybe it’s this year and the end of term effect, I need my holidays. I am so tired and in so much pain right now. I’m also so fed up with the GP especially the stupid triage system, she wants to speak to me every month or so, but I can’t have an appointment oh no, phone on the day then wait by the phone all day until she calls back. That’s handy when I’m in class. If I miss it I miss it or I can duck out and discuss all my personal health conditions in the corridor or maybe have a day off a month!!
Sorry I’m just fed up today
Akire · 25/05/2021 17:06
Sounds a tough day and tough job at the best of times. Do you have some down time planned for half term? Have you been through Occupational Heath with regard to giving you any furniture or support may help ease strain or pain?
Can you arrange GP to ring every 6weeks so better fits half terms? Do they stop anything if you miss a phone cal? Or is this purely a try talk to you every month but does nothing?
sweetkitty · 25/05/2021 17:20
Sorry I’m in Scotland so no half term we finish for Summer June 24th 
I don’t really talk to my work about it as I don’t want them to think I can’t do my job. I guess this is some sort of shame but I remember a comment from a member of management about thinking about whether I could still do the job and this was only after I hurt my neck.
I also get really annoyed with the months meds at a time thing too. It’s bad enough we have to suffer pain everyday but to have your painkillers and antidepressants rationed. I know it’s in case you OD or sell them but even 2 months at a time. In 3 weeks time I’ll have to go to the surgery fill in a repeat prescription then 2 days later go collect it, every single month 
Akire · 25/05/2021 17:54
I hate it too like having to do a medical detention! Sorry about no half term just end few weeks till summer for you.
Is there any particular jobs you find shed maybe we could suggest something. Though if it’s breathing and holding head up we may struggle So many people go to work in pain then wonder why they end up having to give up.
RainbowZebraWarrior · 25/05/2021 20:09
I've read your OP a few times now and I'm sorry if it's my brain fog kicking in but I couldn't see if you had been diagnosed with something? I've had chronic pain for years and was eventually diagnosed with hypermobile Ehlers Danlos syndrome earlier this month. I've had numerous injuries and a couple of car crashes plus some other trauma which have clearly contributed. Plus perimenopaus. I think that a clear diagnosis goes some way to help with getting the right treatment, support and pain management.
Huge hugs to you in the meantime. It definitely helps to share with folk who understand.
sweetkitty · 25/05/2021 20:37
Sorry I have fibromyalgia. Neck, sciatic and leg pain been particularly bad this week. Constantly exhausted too because I can’t sleep. Currently on dihydrocodeine, topiramate for migraines and citalopram. Have been on pregabalin, gabapentin, amitriptyline, duoxetine and probably a few more I can’t remember. Try to take as little as possible for side-effects. Also see chiropractor fortnightly. Headaches/migraines can be horrific at times but I’ve had them since age 6 so don’t think they are fibro related. Diagnosed 6-7 years ago but probably have had it years before that as have the usual weird symptoms too like Raynauds, very sensitive to cold and pain, noise etc.
chaosrabbitland · 25/05/2021 21:00
@sweetkitty
I don’t really talk to my work about it as I don’t want them to think I can’t do my job. I guess this is some sort of shame but I remember a comment from a member of management about thinking about whether I could still do the job and this was only after I hurt my neck.
I also get really annoyed with the months meds at a time thing too. It’s bad enough we have to suffer pain everyday but to have your painkillers and antidepressants rationed. I know it’s in case you OD or sell them but even 2 months at a time. In 3 weeks time I’ll have to go to the surgery fill in a repeat prescription then 2 days later go collect it, every single month
im really sorry op , my health isnt the greatest either , and i so agree , when the whole script system was taken away from pharmacys just reordering it for us and the onus got put onto us to have to do ourselves it became a real pain in the butt i think for a lot of poorly people out there . . and if your on more than 2 meds its even more of a pain as they run out at different times . there is the option of doing it online but i tried with my surgery and wound up locking myself out of it after trying how many times with the damned password they gave me . the dispenser at my pharmacy said it was changed to stop people stockpiling meds that they werent taking anymore ,but the pharmacy were automatically just reordering them , to reduce waste in the nhs as it were , but those 2 reasons you said about make perfect sense as well . whatever it does not i feel in any way help ill people and iv heard a bloke complaining about it bitterly last time i collected mine
Moondust001 · 25/05/2021 21:13
@sweetkitty
I don’t really talk to my work about it as I don’t want them to think I can’t do my job. I guess this is some sort of shame but I remember a comment from a member of management about thinking about whether I could still do the job and this was only after I hurt my neck.
I also get really annoyed with the months meds at a time thing too. It’s bad enough we have to suffer pain everyday but to have your painkillers and antidepressants rationed. I know it’s in case you OD or sell them but even 2 months at a time. In 3 weeks time I’ll have to go to the surgery fill in a repeat prescription then 2 days later go collect it, every single month
I totally get it. It's arthritis for me. and yes, it's a pain (sorry!) having to get meds every month, especially since half a dozen of the pills could probably do the job if you are that way inclined. But the GP has no choice in this - it's the rules that they have to work with.
And I have also had the management question, albeit I suspect a bit more sympathy involved, about whether I should continue to work.
But if you are anything like me you are there because it's part of what keeps you sane and keeps you going. It's been an incredibly long and bloody impossible year, and it ain't over yet. Even those without the extra burdens of health conditions are struggling. In some ways, hard though it is, I think we may sometimes be better off, because we are used to having a daily fight, and we know what that fight is. At least we can put a name to it, and in this pandemic ridden world, many can't.
You have a month left to go - you can do it. You've got this far so you are a sight tougher than you think. You are nearly at the finish line - and it coincides with that heatwave they are promising. Although I won't be laying bets that the heatwave!
Mugsen · 25/05/2021 21:39
I can sympathise, what a horrible lot you have to cope with. I have fibromyalgia and am hanging onto a FT job by the skin of my teeth. Trying to cut down on the medication but then don't sleep. It's so hard sometimes. I would try and get as much rest as you can at the weekend. I get what you're saying about not wanting to say you're struggling. I feel ashamed I can't get my head round things at work, I'd have found easy before I was ill. Get signed off if you're too unwell to work.
sweetkitty · 25/05/2021 22:01
Thank you everyone I’ve just checked my fit bit and I did 11,000 steps at work today that’s a normal day I don’t sit down at a desk. To be honest that’s better for me as sitting makes me seize and actual be sorer but then I get tired. We have worked right through haven’t had a day at home which people are often 
about we had children in school everyday throughout lockdown. It’s been a hellish year for me for a lot of reasons and I’m counting down the days until the Summer holidays. A heatwave would be nice too or a few dry days
SoddingWeddings · 25/05/2021 22:06
I had to come off topiramate - it's notorious for making you into a zombie, and it was so sedating for me, that I nearly lost my job because of my drowsiness, brain fog and memory failures. They thought I was lying all the time because I couldn't remember basic conversations aged 38.
I've been having botox for the last two years for my chronic migraine, and have just started on Ajovy last week.
I can't recommend enough that you review your meds completely and see if they can find a non-sedating combination for you.
Are you under a neurologist?
SoddingWeddings · 25/05/2021 23:03
I managed one week on amitryptiline and got in massive trouble with my old work because I needed to sleep 20+hrs a day. It's just another failed treatment for me!
Ajovy is a monthly injection, one of the new CGRP meds. Scotland approved access to these literally two years before England. Aimovig is another one.
I'd ask for a review with the neurologist. Side effects are a very valid reason to change treatment, especially if you're still having over 7 days of migraine per month.
sweetkitty · 26/05/2021 07:28
@SoddingWeddings just had a google
After 40 years of migraines I’m utterly fed up, last time I was told it was because I was taking too many sumatriptan, I’m only taking them so I can function go to work and have a life. because lying in a dark room with a pillow over my head for 10 days a months really sounds like fun! It was go away and wean yourself off sumatriptan.
SoddingWeddings · 26/05/2021 08:02
Totally understand it. At my worst, I was a zombie on topiramate, having up to 27 days a month of migraine and only permitted 6 triptans to survive. Then I saw neurology.
I'm now on nortryptiline (zero side effects), I take all the supplements recommended by my neurologist: www.migrainetrust.org/living-with-migraine/treatments/supplements-and-herbs/, use a Cefaly II daily on prevention mode, wear Migralens sunglasses instead of normal sunglasses, I've had Botox for 2yrs and still been up to 16 days a month of migraine.....but they have been so much milder, plus I've been given two types of triptan to bounce between and permitted up to 12 per month.
I used my first Ajovy on Wednesday. I'm currently in the sweet spot of Botox, around week 8-10, where I usually get a week off migraines completely. Today is day 18 (!! !!!!) of being migraine and headache free!! For the first time in I don't know how long, maybe a decade or more?
These treatments have slightly crossed over, which they never will again, but I feel amazing and am praying it continues.
Pinchoftums · 26/05/2021 08:10
Oh so tough. I have FM and though work full time am very lucky as I am s of employed for half of it so can put in rest times at home.
Have you tried acupuncture. Got rid of my lifelong migraines and almost of of the high level pain. It took 10 sessions, th first three made me feel terrible then hugely better. I now have regular top ups.
Also I have found some foods that it I eat even a tiny bit of make me feel shit for days (raw onion and wheat). Any chance you can go part time rather than lose the job completely?
SleepyMathematician · 27/05/2021 11:02
Have you been on beta blockers for migraines? I’m on propranolol and it’s the only thing that helps - triptans didn’t touch it.
I’ve only just found this part of mumsnet and it’s a lifeline reading this, I have so much sympathy for you. I have various autoimmune diseases but have had long Covid for over a year. The muscle pain has been the worst symptom along with extreme fatigue and they are now looking at either an MS or fibro diagnosis. It feels pointless complaining to the doctor. They can’t seem to do much that they aren’t already but the pain is relentless some days.
Like you I teach though privately at home so I suspect mine is easier than yours! Even so I’m on my knees this week with desperation for the half term break and I can only manage part time hours. I don’t want to stop working though, I totally get how it keeps you going in a way.
I was doing pretty well on Amitriptyline and Gabapentin but I’ve been made to come off of both because I kept getting low sodium episodes which have landed me in hospital. So now I’m wondering what else I can do to cope.
Too much sugar definitely makes my symptoms worse. I do so much better on a low carb diet. But I have zero willpower and the sweet stuff beckons so strongly. I can’t touch wheat anyway as I’m coeliac.
You’re doing so well to do the job you do - hang in there! It will be the holidays before you know it.
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