CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

@sweetkitty welcome, you are the first person I have “met” with hemiplegic migraines, I read online that topiramate might be prescribed, but as I am already on mirtazapine for a provisional diagnosis of fibromyalgia (waiting for rheumatology referral since February) I am unsure about adding more medication. I have had 2 episodes of it now and ended up at the hospital as they have to rule out a stroke.

I have a phone consultation next Wednesday with my GP but like you it could be absolutely any time during the day, I was on hold for nearly 15 minutes this morning just to check a prescription that is not on repeat yet had been reissued. It is a lot of mental load and I haven’t been working for over a year so well done to you for working 💐

@Evenstar I’ve had migraines since I was 6 years old, my first one was a hemiplegic one and as you can imagine quite scary at the time. I was sent to hospital and all sort of tests performed. I’ve been on all sort of meds over the years (I’m almost 46 now) I’m not convinced the topiramate actually does much. I take sumatriptan at the start of an attack and if I take it quick enough I can usually stop one. It will bubble away sometimes though.

Weirdly I have never been diagnosed with migraine until last year when the left side of my face dropped, my eye was almost shut and I had a loss of sensation. This year it was the opposite side and in patchy areas from my foot up to the top of my head. Both times I have been scanned as a suspected stroke and given the all clear, but I haven’t had a headache, but it seems this can either be an aura before a headache or you may not get a headache, it’s confusing for sure.

I was diagnosed with atypical trigeminal neuralgia in 2011, and wonder if that could also have been migraine.

I think on one other occasion in around 2005 I have had a headache I would have described as a migraine but it was a one off. My late mother suffered hideous monthly migraines that ended when she had a hysterectomy. She also had numbness in her face, severe visual disturbances and a numb arm, but hemiplegic migraine was never mentioned. I think I am past the menopause at almost 57, but am on HRT so do wonder if there might be any connection, but it does seem to be very poorly understood.

That must have been a very scary experience for a child.

Saturdays excitement... waiting for some
Sticky stuff remover to arrive from Amazon living it up here! Accidentally put some double side tape on the floor not masking tape and huge black stick mark that couldn’t face trying scrub off. So this stuff better work.

What highly thrilling task awaits you today?

Hello everyone sorry I've been so quiet lately. 10 days ago I had a huge breakthrough and my pain lifted. Originally they told me the nerve denervation (burning nerves around my facet joints) would work in a couple.of weeks and it was so bad the pain following. I gave up hope it had worked then 8 weeks after the pain went.

I managed to push my son on a roundabout for the first time!

I'm still very tired but hoping that will lift.

@doadeer

Hello everyone sorry I've been so quiet lately. 10 days ago I had a huge breakthrough and my pain lifted. Originally they told me the nerve denervation (burning nerves around my facet joints) would work in a couple.of weeks and it was so bad the pain following. I gave up hope it had worked then 8 weeks after the pain went.

I managed to push my son on a roundabout for the first time!

I'm still very tired but hoping that will lift.

That’s amazing I’m so Happy for you and to do something with your son for fun!

@doadeer well done little baby steps

Does anyone else think if they didn’t wake up in pain in the nothing they would think they were dead? I’m using my days’ energy to take the dog for a walk. That will be me wiped out after that though. But feel thankful I can still do that.

[quote sweetkitty]@doadeer well done little baby steps

Does anyone else think if they didn’t wake up in pain in the nothing they would think they were dead? I’m using my days’ energy to take the dog for a walk. That will be me wiped out after that though. But feel thankful I can still do that.[/quote]
I think this has happened twice in last ten years. Took me all morning work out What was wrong! It’s like something is different but couldn’t put finger on it. We get so used to pain as a back ground noise it’s very odd.

It’s Friday again.. how did that happen! Half term coming up great for some not so good for others.

Hey all. Have had a mixed week. Something happened to my shoulder/neck on Sunday and I was in a lot of pain. It is nearly better now. Possibly a pinched nerve.

Am getting my first Covid vaccination today, which is making me a little anxious.

doadeer Hope things stayed OK for you this week. How lovely that you could play with your son. :)

and all round.

Yesterday, when I got back from the attending doctor (my doctor is on leave) and got antibiotics for a lingering sinus infection, I put my head down for half an hour because of my head aching so much. But... I went to a doctor I don't know and she was actually lovely. So, little yay! Later on, I cleaned the kitchen and the downstairs windows from the inside. My partner scrubbed the driveway (and got rid of weeds) and cleaned the windows on the outside. I couldn't feel my back or ankles anymore by the time my son needed to get to bed, but the house feels so much lighter

Knackered today though , but I managed to pick up decoration piñatas for my son's birthday in the garden

I hope everyone gets to see a bit of sunshine during the weekend

@GrouchyKiwi

Hey all. Have had a mixed week. Something happened to my shoulder/neck on Sunday and I was in a lot of pain. It is nearly better now. Possibly a pinched nerve.

Am getting my first Covid vaccination today, which is making me a little anxious.

doadeer Hope things stayed OK for you this week. How lovely that you could play with your son. :)

and all round.

Great news about your jab I will cross everything for no side effects.

@Navilana

Yesterday, when I got back from the attending doctor (my doctor is on leave) and got antibiotics for a lingering sinus infection, I put my head down for half an hour because of my head aching so much. But... I went to a doctor I don't know and she was actually lovely. So, little yay! Later on, I cleaned the kitchen and the downstairs windows from the inside. My partner scrubbed the driveway (and got rid of weeds) and cleaned the windows on the outside. I couldn't feel my back or ankles anymore by the time my son needed to get to bed, but the house feels so much lighter

Knackered today though , but I managed to pick up decoration piñatas for my son's birthday in the garden

I hope everyone gets to see a bit of sunshine during the weekend

It’s lovely when you get to do some DIY or spring cleaning isn’t it. Pity it’s an endless battle. I have endoscopy coming up next Friday to look at stomach pain but not convinced will find anything or if just another well we don’t know things.

@Akire It is . I used to love working in the garden, even potting plants in the middle of a rain storm . I still love gardening, but it's different/much slower with all the pacing / managing. Sometimes it helps me to think of it in terms of "letting grow what can grow, at the pace it will thrive". Because life/nature has to take its time, too. Maybe that's a bit philosophical and not really correct, but

The joy of relaxing and hearing the buzzing wildlife is still the same though .

It's a pain really, anxiously awaiting tests (and probably thinking too much about it because of it being present in your life) and then results. Especially when they come up empty-handed, I really hope that won't be the case for you.

I wish you a calm weekend and will be crossing my fingers for you lots!

I've got a few plants in pots in the garden - I have tomatoes, runner beans and courgette. I don't really know what I'm doing but i enjoy doing it.

Sounds lovely. Don’t have a garden or outside space so no such luck.

The doctor has decided it would be best to have a neurology referral for the hemiplegic migraines, but warned me it will be a long wait. Still not heard anything about the rheumatology referral that was made in February.

Feeling really tired today, but have managed to walk the dogs and do some washing so that will have to do I think.

Slow and steady just as good as great buckets of stuff. Yes covid going make things miles longer and we’re huge before.

Hello everyone, checking in as I find this very interesting that several of us have a hemiplegic migraines diagnosis. @Jenthefredo, @Evenstar and @sweetkitty in the last two pages alone.

I'm going to start a thread tomorrow about HM as don't meet many with it, in the shiny new section.

Good to see you @NotanotherboxofFrogs it’s been quiet around here! Hope everyone has been enjoying the sun.

Hi everyone hope you are doing OK, this hot weather is a bit trying for me, I have bought a cooling throw to try on the bed as I definitely sleep better if I can keep the cover on.

I am waiting to have my rheumatology appointment to confirm fibromyalgia, but on one of the fibromyalgia support groups I have joined I heard about this study linking fibromyalgia to insulin resistance and recommending a low carb diet. I certainly need to at least lose the 2.5 stone I put back on over lockdown so am going back to low carb/high fat which I had success with before. I found this article on it in case it’s of interest or seems like an issue others might identify with www.medicalnewstoday.com/articles/325155

I feel like it is something I can do to try and help myself whilst I wait to get seen by the specialists.

Hi everyone, checking in to ask how Akire's endoscopy went today Hope you're comfortable!

I have migraines with aura since I was a child, sometimes caleidoscope view (recent year). I thought the view was terrifying when I first experienced it, to be honest, as if I was about to have a heart attack. Now I just lie still, wishing it goes away soon.

What I read about hemiplegic migraines is that some bodily function goes away for a while? That must be excrutiating! May I ask, does this hurt as well, or is it "just" numbness?

Wish all of you a peaceful Friday!

@Navilana

Hi everyone, checking in to ask how Akire's endoscopy went today Hope you're comfortable!

I have migraines with aura since I was a child, sometimes caleidoscope view (recent year). I thought the view was terrifying when I first experienced it, to be honest, as if I was about to have a heart attack. Now I just lie still, wishing it goes away soon.

What I read about hemiplegic migraines is that some bodily function goes away for a while? That must be excrutiating! May I ask, does this hurt as well, or is it "just" numbness?

Wish all of you a peaceful Friday!

Thanks that’s very kind. It was quicker than expected but didn’t pin point the problem. So still bloody hurts and don’t know why. Though few things could be but you know what it’s like when nothing is simple as X and take 2 pills and it goes away!

How’s everyone coping in the heat although I’m sure somewhere it’s raining. My feet have been killing me im wheelchair user so they do swell if sit long periods but now the balls of my feet started swelling when out less than hour. Really hurts and feels right not sure anything I can do about it. So annoying :( I expect them to swell if doing something exciting and all day but not quick trip down the road and back. Sometimes feels body wants to stop be doing anything.

I much prefer the heat to the cold! My pain flares up if it's too cold, and being outside to see people coz covid doesn't help. But I don't like it too hot either.

I saw my consultant today. He doesn't want to do further surgery at the moment which is good in a way but it also means there isn't a miracle cure available. I did get a steroid injection which I've never had before so I'm hoping it helps.