FabSwingers.com forum: Chronic pain and invisible illnesses

By (user no longer on site) OP
over a year ago

Today is a bad pain day.

I'm currently wrapped up in bed, dosed up on heavy pain meds. I hate that pcos stops me for doing so much now. At least a couple of weeks ago month are wasted because I'm in so much pain.

Those of you who also have chronic pain, what do you do that helps you cope?

And how do you not get really pissed off when people just think you're lazy or exaggerating about the pain?

Cuddles greatfully recieved!

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By *uzzy NavelWoman
over a year ago

so near and yet so far....

Awww hugs Eileen xxx I used to suffer with migraines so can’t imagine what you must be suffering xxx feel better soon.

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By (user no longer on site) OP
over a year ago

"Awww hugs Eileen xxx I used to suffer with migraines so can’t imagine what you must be suffering xxx feel better soon."

Thank you lovely! Migraines are horrible! They can be just as debilitating, lucky me, I get them too

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By (user no longer on site)
over a year ago

Sending a virtual cuddle x

I don’t suffer with any chronic pain but I do feel for those who do. Seeing how difficult it has been for my Mum, who has suffered with chronic back pain for 30 odd years and the way it has affected her as it got worse over the years, has at least helped me to empathise, even if I cannot understand how it feels x

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By (user no longer on site) OP
over a year ago

"Sending a virtual cuddle x

Thank you!

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By *ntrigued32Couple
over a year ago

Nottingham

Medication, stretches and sexercise and learning that those who have no interest in learning about your illness, to understand why you're in so much pain, shouldn't be your concern, it says more about them than you.

If all the above fail, take the maximum you can take of your pain meds, wrap yourself in a blanket and sleep.

You have my sympathy, and my inbox is open if you ever need an ear.

Sending

and healing strength. Hope you feel better soon.

Jo.Xx

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By *rightonsteveMan
over a year ago

Brighton - even Hove!

I’ve had to go to aback pain clinic and it went really well, a mix of advice and physio and explanations etc.

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By (user no longer on site)
over a year ago

About 3 years ago I was referred to a pain clinic. After attending sessions on coping methods and pacing I was then offered a series of injections which get re done every 9 months. Really worked for me.

There’s all sorts they can do now including sacral nerve stimulators. Ask your gp for a referral and don’t be afraid to try what they suggest.

It got my life back

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By *0werc0upleCouple
over a year ago

Horsham

Have you tried CBD oil has done wonders for alot of people and its all natural

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By (user no longer on site) OP
over a year ago

"Medication, stretches and sexercise and learning that those who have no interest in learning about your illness, to understand why you're in so much pain, shouldn't be your concern, it says more about them than you.

If all the above fail, take the maximum you can take of your pain meds, wrap yourself in a blanket and sleep.

You have my sympathy, and my inbox is open if you ever need an ear.

Sending

and healing strength. Hope you feel better soon.

Jo.Xx "

Thank you beaut! Much appreciated

I often meditate yet didn't even think of giving that a go!

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By *naswingdressWoman
over a year ago

Manchester (she/her)

I'm in this club too. It's just hard. You learn who your friends are, that's for sure.

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By (user no longer on site)
over a year ago

Virtual hugs from me too.

I don't know what you are going through, it must be so hard. But don't add to your worries by being angry at what people think.

Sod them and focus on your own healing.

Feel free to reach out any time for a chat and I hope the pain eases for you quickly!

xx Niki

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By (user no longer on site) OP
over a year ago

"About 3 years ago I was referred to a pain clinic. After attending sessions on coping methods and pacing I was then offered a series of injections which get re done every 9 months. Really worked for me.

There’s all sorts they can do now including sacral nerve stimulators. Ask your gp for a referral and don’t be afraid to try what they suggest.

It got my life back "

I've been waiting on a scan for over a month...I will ask them about other treatments when I eventually see a doctor!

Thank you

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By (user no longer on site) OP
over a year ago

"Have you tried CBD oil has done wonders for alot of people and its all natural "

I have, it certainly helps. I've been medicating with CBD for years and tbh, it's the only thing that does help!

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By (user no longer on site) OP
over a year ago

"Virtual hugs from me too.

I don't know what you are going through, it must be so hard. But don't add to your worries by being angry at what people think.

Sod them and focus on your own healing.

Feel free to reach out any time for a chat and I hope the pain eases for you quickly!

xx Niki"

Thank you

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By *o_eye_deerMan
over a year ago

The South Near That London

My daughter suffers with ME/CFS, fibromyalgia and intercranial hypertension requiring regular lumbar punctures - she’s lost pretty much all her teenage years to it, been socially isolated by her former classmates because she’s had to be home tutored, it’s so frustrating when people don’t get that just because she doesn’t “look” ill doesn’t mean she isn’t! But we are so proud of how she’s coped, manages to stay pretty positive about life in general - and has started planning for her career post education

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By (user no longer on site) OP
over a year ago

"My daughter suffers with ME/CFS, fibromyalgia and intercranial hypertension requiring regular lumbar punctures - she’s lost pretty much all her teenage years to it, been socially isolated by her former classmates because she’s had to be home tutored, it’s so frustrating when people don’t get that just because she doesn’t “look” ill doesn’t mean she isn’t! But we are so proud of how she’s coped, manages to stay pretty positive about life in general - and has started planning for her career post education "

That must be awful! I bet you are proud! That's an incredible achievement!

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By (user no longer on site)
over a year ago

Vamp lives (and struggles) with Fibromyalgia, chondromalacia patella, and regular migraines. Some days, especially winter, she cannot move.

We empathise with you, really do. It is not easy living a ‘normal’ life, let alone a swinging lifestyle.

Hope you are soon on the road to recovery.

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By (user no longer on site)
over a year ago

Big hugs lovely, I’ve got undiagnosed stomach pain that wipes me out when it hits. I’ve had scans and blood tests but found no cause. All I can do is take the painkillers that make me all dizzy and go to bed. X

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By (user no longer on site) OP
over a year ago

"Vamp lives (and struggles) with Fibromyalgia, chondromalacia patella, and regular migraines. Some days, especially winter, she cannot move.

We empathise with you, really do. It is not easy living a ‘normal’ life, let alone a swinging lifestyle.

Hope you are soon on the road to recovery."

Thank you! I hope she's able to find some relief too!

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By *uxom redCouple
over a year ago

Shrewsbury

Big hugs op x x

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By (user no longer on site) OP
over a year ago

"Big hugs lovely, I’ve got undiagnosed stomach pain that wipes me out when it hits. I’ve had scans and blood tests but found no cause. All I can do is take the painkillers that make me all dizzy and go to bed. X "

Thanks lovely! I hope you get a diagnosis soon!

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By (user no longer on site) OP
over a year ago

"Big hugs op x x "

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By (user no longer on site)
over a year ago

When I (Bubbles), worked as a nurse, we would regularly see ladies arrive in operating theatres, undiagnosed abdo pain. Laparoscopy revealed nothing wrong with bowel. Scans would show nothing. Blood tests same. Occasionally, it would be Gynaecology related, ovaries, uterus etc. Or Renal. I personally have Diverticular disease. When that hits...yummy!!

Hope they eventually get to the bottom of it.

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By (user no longer on site)
over a year ago

Big hugs. I get it but I'm lucky enough not to suffer quite as badly as you. Saturday night was sheer hell for me, it woke me up and I was in agony. I went from baths to hot compresses. Naproxen. Meditation. Eventually the pain became to a level I could cope with. I have a hot tub for that reason. I also have heated seats in my car. I basically go anywhere I can get heat when the pain is bad.

Today I'm almost pain free again, well with pain relief and a long soak.

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By (user no longer on site)
over a year ago

I have Fibromyalgia, so I have days where I barely scrape through. I have quite a high pain threshold for aches and such so I just plough through (don't have much choice as Missy has to work her arse off to support us and someone has do deal with the kids the driving) but it takes a serious mental toll. ATM I'm in the middle of a huge anxiety episode and my pain is flairing like mad. Nothing really deals with the pain and the anxiety meds are just dampening it ATM.

I spent most of Wednesday last week in bed asleep after doing the school run as I just couldn't cope with it all anymore.

Anyone with chronic illness just "gets by" and I'm sure we're "not okay" far more than we are ok! J x

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By *o_eye_deerMan
over a year ago

The South Near That London

That must be awful! I bet you are proud! That's an incredible achievement! "

Very! And thank you, I meant to add about things that have helped - coping strategies (CBT) and a very routined day have helped, and CBD oil has helped when her symptoms are less prominent - I’ll will say that medical treatment has been nonexistent or referrals don’t get referred - I have total respect for NHS staff, and the care you get in an emergency is fantastic, but it can be disheartening when she needs a lumbar puncture and you get sent to A&E and the Doctors are googling her condition then after 6+ hours you get sent home as they have no one available who can do the procedure - sorry for the rant OP, we consider ourselves lucky that we have a great support network of friends and family and working for ourselves means we can both be there for her if needed.

One thing I will say, despite a few bad apples, FAB has and is a great pressure release for us, we can be ‘us’ for a few hours, took a while to stop feeling guilty about enjoying ourselves though! So a prescription of FAB induced fun should be a requirement to all

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By *anSMan
over a year ago

Shrewsbury

Sending virtual hugs Eileen xx

I have a rheumatic condition called Ankylosing Spondylitis, it affects my lower back, hips, as well as other joints across my body..

In extreme cases, it’s referred to as bamboo spine, where the vertebrae start to fuse together (luckily I have no fusion...... yet)..

I’m encouraged by health professionals to stay as mobile as possible, stretches etc..

I’m on fortnightly immunosuppressant injections, which stop my body reacting to any inflammation, which would normally further aggravate, by increasing inflammation (it’s a vicious circle)..

I used to pop diclofenac and naproxen tablets like smarties, since starting the injections 7yrs ago, I weaned myself off the tablets, and have only taken them if I have a flare up (which is incredibly rare these days)..

Fatigue is still a big thing though, and yes it’s annoying when people just don’t understand, and think I’m being lazy..

Once again, big virtual hugs, rest up, keep the meds going in, and hope you feel better soon..

Dan x

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By (user no longer on site)
over a year ago

Hope they eventually get to the bottom of it."

Thank you, yes I have that and I Ibs as well. They reckon mine could be muscular but I would think 18 months is a long time for that to happen x

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By (user no longer on site)
over a year ago

"Vamp lives (and struggles) with Fibromyalgia, chondromalacia patella, and regular migraines. Some days, especially winter, she cannot move.

We empathise with you, really do. It is not easy living a ‘normal’ life, let alone a swinging lifestyle.

Hope you are soon on the road to recovery.

Thank you! I hope she's able to find some relief too!"

Many thanks.

Some days, especially during this warmer weather, she can manage loads of things, walking, house work, ‘play time’, etc. Sometimes, she stays bed ridden for days at a time.

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By (user no longer on site)
over a year ago

I, suffer from rheumatoid arthritis and fibromyalgia when in a flair the pain is unbelievable thankfully under control at the moment. My sympathy for you op I can totally relate. Hope things improve for you soon

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By (user no longer on site) OP
over a year ago

Thank you all, I'm medicated and going to attempt a nap before a nice soak in the tub later.

I'm seeing a friend this evening and really don't wanna cancel!

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By *asmeenTV/TS
over a year ago

STOKE ON TRENT

"Today is a bad pain day.

I'm currently wrapped up in bed, dosed up on heavy pain meds. I hate that pcos stops me for doing so much now. At least a couple of weeks ago month are wasted because I'm in so much pain.

Those of you who also have chronic pain, what do you do that helps you cope?

And how do you not get really pissed off when people just think you're lazy or exaggerating about the pain?

Cuddles greatfully recieved!"

Hugs and love

xx xx xx

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By (user no longer on site)
over a year ago

We have had to cancel, mostly a day or two before, but, sometimes, on the day.

We do not bother if people consider us time wasters....we offer an alternative, and then, up to them to take it or leave it.

It does state in our profile, a little about Vamp’s ‘problems’.

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By *icketysplitsWoman
over a year ago

Way over Yonder, that's where I'm bound

I try and keep everything moving, even through the pain. I don't take oral pain killers but will sometimes use topical ones.

Mostly, it's avoiding people so that I don't snap at them and breathing through it.

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By (user no longer on site) OP
over a year ago

Well I managed a nap, now having a nice soak in the bath. I feel much better than I did!

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By (user no longer on site)
over a year ago

"Well I managed a nap, now having a nice soak in the bath. I feel much better than I did!

Good. Try and get an early night. Maybe watch a movie or listen to some music and read. xx Niki

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By (user no longer on site) OP
over a year ago

"Well I managed a nap, now having a nice soak in the bath. I feel much better than I did!

Good. Try and get an early night. Maybe watch a movie or listen to some music and read. xx Niki"

I'm seeing a friend this evening, but it will be a relaxed one

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By (user no longer on site)
over a year ago

I have CFS/ME (since 1985) and haven’t found a solution to the pain yet (dr’s aren’t interested in helping me) other than copious amounts of paracetamol and ibuprofen.

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By (user no longer on site)
over a year ago

"Well I managed a nap, now having a nice soak in the bath. I feel much better than I did!

Good. Try and get an early night. Maybe watch a movie or listen to some music and read. xx Niki

I'm seeing a friend this evening, but it will be a relaxed one

Hope you are feeling better today. xx N

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By (user no longer on site) OP
over a year ago

"Well I managed a nap, now having a nice soak in the bath. I feel much better than I did!

Good. Try and get an early night. Maybe watch a movie or listen to some music and read. xx Niki

I'm seeing a friend this evening, but it will be a relaxed one

Hope you are feeling better today. xx N"

Thank you, I ended up staying in last night, pain was at a 6/7 all evening which is manageable for me. Still about the same today.

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By (user no longer on site)
over a year ago

"Well I managed a nap, now having a nice soak in the bath. I feel much better than I did!

Good. Try and get an early night. Maybe watch a movie or listen to some music and read. xx Niki

I'm seeing a friend this evening, but it will be a relaxed one

Hope you are feeling better today. xx N

Thank you, I ended up staying in last night, pain was at a 6/7 all evening which is manageable for me. Still about the same today. "

Look after yourself! x N

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By *acey_RedWoman
over a year ago

Liverpool

I have endometriosis and have had cysts on my right ovary which were agonising. I now have damage to my femural nerve from it which causes pain in my right leg and hip. Our reproductive bits sure give us ladies some issues!

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