Chronic pain folks

[Fanny Muchmore]

Hello to all my chronic pain friends. I have Hypermobile Ehlers Danlos Syndrome, POTS, Fibromyalgia, ME, MCAS, Gastroparesis and various headache issues including icepick headache, hemiplegic migraine and cluster headache.

 

[sleepisforwimps]

Sending love to you all. So glad this thread exists too!
My brother died suddenly in November last year and my ME has been really bad at times since. Its nice to have a little corner of tattle to vent on!

I'm really sorry for your loss x

literally the thread i've needed! feel like i've been invading others a bit bc symptoms that have been brushed off as 'just part of xyz' in the past have been getting worse so have been convincing myself something else is wrong.

i've got hashimoto's thyroiditis, cfs, chronic pain (nerves joints etc), pcos and migraines. my rosacea is pretty bad too, flares at the same time as my pain. got diagnosed when i was 14 so had a bit of a time but i'm definitely in a better place than i was six years ago! meds i'm on are levothyroxine, amitriptyline, pregabalin, double progesterone pill (recently switched from provera) and sumatriptan

That sounds really rough, though I'm glad to hear things are a bit better now

I have chronic migraines, fibro, spondyloarthritis / thoracolumbar pain, biceps instability, and so on. I've lost count of my mris, xrays, & other tests. I just had a spinal epidural injection so I'm on rest for three days. It hurts but I'm kind of relieved, because I've been having physical therapy 4x a week and really struggling to keep up with it because of the pain and sheer exhaustion it's causing. I sleep decently thanks to my meds but just wake up exhausted and too fatigued to do anything. I'm tired of my life revolving around dr visits and physical therapy because that is what I have to save my limited energy for but it's just relentless. And it's not improving my pain. So tired of being trapped in my body

I hear you. I'm so sorry that you're going through this x

I've got an MRI of my whole spine next month. Glad that the appointment has been booked but nervous about being in the machine due to MH conditions.

Managed 3 hours out today doing necessary errands. Paying for it now with hip and wrist pain. Yuck.

Sending love to all of you.

Just about to treat myself to some codeine so I can actually hug my husband as we watch The First 48.

I hope that the codeine helped x

I haven't had covid. But I am in a neuro rehab hospital and those here who have had covid have been completely wiped out by it and some are suffering some fairly debilitating side effects for months later.

Not much new going on with me but on top of constant pain I am having the worst spasms and tremors. They think it could be caused by one of my meds so playing medicine roulette again.

OH that sounds utterly vile, I'm so sorry x

Constipation and dry mouth from amitriptyline 10mg. I'm supposed to increase to 20mg but am concerned it'll worsen these issues. I drink at least 2L water a day, no caffeine, no alcohol, no animal products, plenty of fruit and veg etc.

I guess I'll take out some shares in prunes

Are you Jack Monroe?

I’ve fibromyalgia and had covid. I tested positive for 11 days before I had 2 negative. Really struggled for first 2 weeks now feeling a bit better but not sure if that’s thanks to the antibiotics. Rest was all I could advise and keep fluids up.
Hope your feeling better soon x

Glad to hear you're feeling a bit better x

 

[BessieB]

Anyone suffer ME or chronic fatigue along with pain?

Yes I do

 

[Emzykins]

Didn't know us spoonies had a thread. Hi guys!!

I have endometriosis, I've lived with this for over 10 years, so much so I had to have fertility treatment to carry my daughter. I was later diagnosed with fibro, which appaz goes hand in hand with endo (well vice versa) and now I've just been told my entire womb/uterus has prolapsed. Just a bit more fuel added to my fire. They've said carrying a child won't have helped but they're mainly blaming the countless laparoscopies I've had to remove endo. I'm a single mum and struggle to even pick up my 3 year old some days. I could cry!

 

[Libbylulu]

Osteoporosis sufferer here. Not great

Can I ask to fibromyalgia sufferers, have you had the covid vaccine and what we’re the side effects, if any?

 

[Thatscool]

Hi guys, I hope you are all coping ok today .

I'm wondering if anyone is getting passed from pillar to post like I am at the moment with doctors and hospital? Or if anyone has any advise if this happened to them before?
I feel like I'm losing my mind at the moment, in a cycle of pain and exhaustion but I can't sleep.
Feel that people are tired of me at this stage, sometimes I just want to give out or have a rant without being given advice and quizzed.

 

[ronniestigs]

morning guys, hope you're all well.
ive got the driest eyes ever this morning

 

[123andbreathe]

Hi folks, what are your main problems with fibromyalgia?

Fatigue, all over pain, stiff joints, issues regulating heat, ibs, hypersensitivity to touch/ pain the list feels endless.

 

[TapToBoreMeRigid]

I've got an MRI of my whole spine next month. Glad that the appointment has been booked but nervous about being in the machine due to MH conditions.

Managed 3 hours out today doing necessary errands. Paying for it now with hip and wrist pain. Yuck.

Sending love to all of you.

Just about to treat myself to some codeine so I can actually hug my husband as we watch The First 48.

 

[GiggleBee]

Got my PIP renewal form through today nothing has changed, got worse if anything and Im struggling to even think about it as I hate the fight.

 

[Keikochan]

Just wanted to jump on and say hi. I've been diagnosed with long covid and finally have been referred to the Chronic Fatigue Team. Its got to the point where it is really affecting my life. I work full time and by the time i finish work I struggle to function. I cried in the shower because it took too much energy to shave my legs and wash my hair. I just want to feel normal again. I get a good 8 hours sleep at night and wake up and feel like i've been up all night.

The other day i went to a supermarket and carried a not too heavy bag but my wrist hasn't stopped aching since!!!

Hi Pinkpascal, I really understand where you're coming from. My husband has CFS & I have Multiple Sclerosis. The fatigue is debilitating. Regarding the shower, you should have a look in Argos/Amazon for a shower chair. I was too weak to stand in the shower & would often pass out so I got 1 & OMG it is a life saver! They are a bit expensive but def worth the money bc it is used so often & just makes things so much easier & safer. Hopefully it could help you too.

 

[patsy_stone]

I'm currently bedbound with a huge fibro flare. I'm feeling shocking, really really unwell at the moment. Constantly nauseous, pain levels are extreme, fatigue is extreme, insomnia is extreme, despite enough pain killing opioid to bring down an elephant (no comments about me being a pudding, it's baby weight ............... he is only14 !!!). I had covid bad enough to be ventilated on Jan 2021. I've been really unwell since, very very unwell. I've next to no mobility left. I've got thyroid issues, suffered multi organ sepsis that nearly finished me, a spontaneous SAH, diabetic, neuropathic issues and carpal tunnel. My body is a total mess and I seem to be in tears more often than not right now. It's horrible and I don't want to play any more xx

Sending you a very gentle hug.

RA girl here.
I was diagnosed at 24, I'm 53 next month so have had it almost 30 years now . .
Ive been on bioligics for a year now, along with methotrexate and naproxen and a dose of steroids when necessary. Ive recently stopped tolerating naproxen so thats been stopped and during an emergency face to face with rheumatologist today, she decided Ive not responded well to the biologics so has increased the methotrexate and is starting me on another biologic. .

Anyone else experienced the shoddy service of the company who delivers the biologics to home? Its SOOO stressful arranging it all.

She's referred me for injections into my shoulders too ..
Im sick of all this pain . .my sleep is affected as every move I make, wakes me up. I dread waking up most days and facing another day of this shit.

Sending gentle hugs to anyone who needs it

I've had naproxen attempted to be forced on me many times. Never been able to tolerate it, or any NSAID's for that matter. I take an extra strength ibuprofen once in a blue moon when my muscles will not respond to anything else but the acid reflux after is something else...

What is it with delivery companies? Especially ones who deliver important medication/equipment. You are in enough pain without it being made worse by the stress of arranging deliveries with a crap courier.

I hear you with the dreading waking up. I work 5 days a week, up at 4am every day and I genuinely don't know how I do it. And I get precisely no sympathy at work, I'm fairly sure they think I'm making it up. But I rarely have a day off, so that's probably why. I've had two days off in a year and now I've hit the "trigger point" so I'm afraid to take any more days off.

 

[Queen of the Thames]

Constipation and dry mouth from amitriptyline 10mg. I'm supposed to increase to 20mg but am concerned it'll worsen these issues. I drink at least 2L water a day, no caffeine, no alcohol, no animal products, plenty of fruit and veg etc.

I guess I'll take out some shares in prunes

My mouth was so dry when I started with Amitriptyline, I’ve been on 50 for a while now and no dry mouth problems anymore.

 

[GiggleBee]

Anyone suffer ME or chronic fatigue along with pain?

Yes I also have ME too

 

[TapToBoreMeRigid]

Constipation and dry mouth from amitriptyline 10mg. I'm supposed to increase to 20mg but am concerned it'll worsen these issues. I drink at least 2L water a day, no caffeine, no alcohol, no animal products, plenty of fruit and veg etc.

I guess I'll take out some shares in prunes

 

[No username was taken]

Awaiting surgery for Myelopathy. I have been in pain for almost two years. Had every test, meds, acupuncture. Then in October I had a scan on my neck and have been diagnosed two weeks ago with myelopathy. For people who don’t know my discs are pressing down onto my spinal cord and it is very urgent so I am booked in for February. Oh m extremely scared guys and wondering if anyone or knows anyone who has been through this operation?

 

[Pinkpascal]

Hi Pinkpascal, I really understand where you're coming from. My husband has CFS & I have Multiple Sclerosis. The fatigue is debilitating. Regarding the shower, you should have a look in Argos/Amazon for a shower chair. I was too weak to stand in the shower & would often pass out so I got 1 & OMG it is a life saver! They are a bit expensive but def worth the money bc it is used so often & just makes things so much easier & safer. Hopefully it could help you too.

I'll definitely look into one of those chairs. I'm just so exhausted all the time. I was trying to explain something to a customer the other day and my brain went blank. Couldn't even remember what the item I was holding was called!!! Felt like a right idiot.

Luckily my boss is really understanding and has said I need to take regular breaks but I just feel like i'm taking the piss. I've never slacked at work and today I've spent most of the day sat on a footstool because I don't have the energy to stand up. I'm supposed to be tidying and dusting the displays but I've done nothing at all and I feel awful about it.

 

[Thatscool]

I know for me Fibro had taken the fun out of days out or planning activities with my friends and family. I was always on edge waiting for a flare and stopped doing things I loved out of the fear. I spoke with a counsellor earlier this year and it really has helped me, I spent so much time worried about "what if" instead of thinking ok I might need a few days to recover but I can plan for this now, or I might be ok, but I'll still prepare to be nicer to myself anyway.

Chronic illness can be very lonely, you can be in a room full of people but still feel alone, its also often dismissed as an "invisible illness" for some. I think your friend would benefit from speaking to a doctor or counsellor, pain medication addiction is real and they could be feeling shame about this so are very defensive about it. If they are not getting out much as well the medication will be almost like their hobby and the day will revolve around it since they have nothing else to keep their mind stimulated.

Your friend needs help, is there a family member of theirs you could talk to? Unfortunately for you its those that try help that end up in the firing line, you want to help your friend but you also need to look after yourself and you are more than entitled to do that, hopefully your friend might understand that.

 

[Joon]

Hello
I have Crohn’s disease and recently been diagnosed with severe endometriosis, so thought this thread would suit me well!

Nice to know I’m not alone

I’m also wondering whether I have fibromyalgia too… I’ve heard it can be linked with endo. I’m 29 and feel I have joints of an 80 year old!

Hope you feel better soon .

 

[patsy_stone]

Sending a gentle loving hug to all of you struggling with pain.

6 months after my initial rheumatology app which led to scans etc, I've got a date for a follow-up. I just want answers. I fear, that like many of you, my life will continue to revolve around pain management rather than anything bordering on a solution.

Exactly this. All the healthcare professionals I have seen (except the nurse practitioner I mentioned previously) offer absolutely no solutions. And if I hear "self refer to physio" one more time I might scream. That's where all of my hopes for a solution went to die.