Flares (again)

[happytulip]

People talk about flares as if they come and go, wax and wain. My experience since being diagnosed two years ago is that I am always in a great deal of pain, just sometimes a lot worse than others. I take regular paracetamol and gabapentin daily. I am prescribed morphine which I take most days due to terrible joint pain and serositis. I take diazepam when my muscles start to spasm and contract. The only thing that improves my inflammation is prednisolone which The docs are trying to not increase due to other complications. I can't take NSAIDs due to my kidney. I know most people may disapprove of opioid use and diazepam use but I am not an addict, my pain consultant has approved them and I am on the same doses as two years ago which indicates that I am not building up a tolerance. These meds are the only way that I can remain in some form of work and get through the day. However, despite all these meds I am STILL in so so much pain. I just want to cry!!!!! Is this normal for us lupies? Does anyone else get this. I've just had enough of it all. If the pain would kindly sod off I could get on with my life. I know my ex couldn't cope with my pain, poor bloke must have been so tough for him watching me trying to battle on in agony and occasionally having a good blub! What a ridiculous excuse for a man, to leave someone because he couldn't cope with my pain! Sorry for the rant everyone. Just so so sick if it all. I seem to suffer from inflammation in almost every joint and chronic pericarditis/serositis and costochondritis. The inflammation in my jaw is so bad I have visions of cutting my lower jaw off, I swear it would hurt less. Sorry for the rant, I'm just so fed up and exhausted.I hate this sh**y disease, it just takes and takes and takes.

(Sorry I just needed that) . Someone please tell me it does get better?x

[Penelope-Mary]

Oh happytulip..this is me too. Pain in my curse...I too take as much analgesia as I can without 🚩our hyper alert government controlled pharmacy system where I live. Morphine patch, small amout of oxycodone, paracetamol/ codeine with calmative and Valium too when I'm obviously jerking my arms...I have serositis,myosotis and arthritis and at all times I still have pain from mild to extreme which makes me weep when alone. If peeps disapprove of what we take then they just do not suffer the extent of pain we do. I do not have an addictive personality either , I never crave for anything and I do not even feel the effect of the medication except for some relief.

It's my bugbear too, that we need these drugs and yet they do not effectively treat our pain and some feel they need to raise eyebrows. Well meaning peeps will say..why don't you try...insert some alternative panacea...

I was chatting to a pleasant lady in a shop who asked what was wrong with me ( I use sticks to walk tall and not fall over) I said systemic lupus and she laughed and said ...that's the fake disease isn't it?!!!!!

What to say!!!!

Laugh and leave politely is all I could do 😳.

Hugs 😀🌷

PM

[EOLHPC in reply to Penelope-Mary]

HEAR HEAR‼️

Dear PM, you & happy tulip are making SUCH an important point, seems to me. If I've learned anything about our sorts of long term multisystem health stuff over the past 5 years since my version of this was recognised, it's that the best medics admit:

- the scientific establishment doesn't really understand all that much about our stuff

- patients like us know our bodies & our needs better than any medic ever can

So, my feeling is that we need to learn all we can about palliative care in order to get the best we can out of life

The knowledge you & happy tulip bring to our wonderful forum is invaluable

Thank you both...I just wish you'd never had to aquire this knowledge

🍀😘🍀😘🍀😘

PS am blowing a big raspberry at that lady 😠

[Footygirl in reply to EOLHPC]

Ditto, and I am giving her a V sign, with gusto

⚽️

[Janice3 in reply to Penelope-Mary]

omg!!!Who would ever be so Cruel too say ,,,thats a fake disease!!!???

People can Be So CRUEL.

[Penelope-Mary in reply to Janice3]

I was so surprised I laughed. I guess she opened her mouth before engaging her brain...she didn't realise it was ludicrous and hurtful , ignorance is never an excuse but as we KNOW how we feel and why for the most part, it's an excercise in gathering our inner strength ...maybe 😳

PM

🌻

[charmaineholmes]

Hi

I call them flare up I'm in pain with joints everyday but it's my organs that are involved that I associate with my flare up as one month test results fine then next it's not good kidney playing up or liver etc .sorry to hear your ex couldn't cope with lupus I'm very lucky my husband,family & friends are very supportive.hopefully you will find a man like this that will support you .all the best charmaine x

[EOLHPC]

GREAT POST, happy tulip!

Thank goodness for pred!

Am so glad you got this discussion going!

severe daily pain became my norm by the time I was in my late 30s...I then spent 15 or so years increasingly disabled while vainly trying to damp down pain levels via prescription opiates & analgesics. Although these meds had no pos effect on the most profound underlying cause (unrecognised infant onset Lupus), they at least heloed me to be that bit more functional while I survived until my brilliant prof rheumatologist finally figured my version of lupus out...for sure, where chronic pain is concerned, pred is now my mainstay, but the other meds in my combined therapy treatment plan have also proven key to keeping chronic pain unrelated to lupus flares at bay (even my long term daily antibiotics).

My brilliant prof figured me out in 2011: 5 years on, I'm 62 and yes my vulnerability to chronic pain syndromes continues, BUT at a much more bearable level for the time being. even so, at odd times, I've found those familliar pain levels can & do resurface & increase...even when I don't actually think my lupus is flaring...seemingly, familliar pain patterns increase for no good reason....so far I'm managing to damp this tendency down with pred & lifestyle management....but, if aspects of my chronic pain syndromes ever do set in more consistently severely again someday, I'll never hesitate to go for serious pain meds again long term + argue for higher daily dose pred

Am looking forward to following your discussion as replies that come in

And am vvvv much feeling for you

🍀🍀🍀🍀 coco

[happytulip]

I'm loving the replies guys! So my super fantastic Lupus team will be upping my Azathioprine in a few days to see if that helps. They were really helpful and acknowledged that I am in great pain but due to other (way too boring) complications they have to tread really carefully with my treatment. I was honest though and said that at times when I am in so much pain I just want to take everything. Not to die, not because I am suicidal, just because the pain is too much to cope with. Similarly, I am always in pain but when my heart and lungs start to inflame I know I'm in big trouble. My jaw too, when that starts to burn I'm done!

As for the delightful lady that suggested Lupus was a fake illness. A V sign could do it, or a raspberry. I think that perhaps she is so full of crap that she must need an enema! If that fails I'd offer to give her a lecture on SLE, its association complications and illnesses in a 3 hour power point presentation with a question and answer session at the end.....whether she wanted it or not. Perhaps my distaste for people with this level of ignorance is due to the fact that my mother who is incredibly supportive has a friend who kindly suggested that my chest pain wasn't caused by an inflamed pericardium ( as was confirmed on the echo report) but was actually psychological and the only doctor I needed was a psychiatrist. All this whilst on a CCU. Nice eh?

I'm loving the idea of the V sign and raspberry though. Anyway, great to hear everyone's stories. I'm now off to fake more symptoms, complain of fictional pain and shoot up on some smack whilst smoking a crack pipe!

Night everyone x

[EOLHPC in reply to happytulip]

👏👏👏👏👏

Reading that feels great‼️

Am so glad of your update...please let us know how you get on with the increased azo 🍀🍀🍀🍀

Recently I was on a week away (meant to be a break between Gyn onc investigations) seeing a lot of a sister in law who STILL thinks I'm a hypocondriac...at one point she called me a spastic...please could she attend your PowerPoint presentation?

😘😘😘😘

[Footygirl in reply to EOLHPC]

So sorry Coco for that thoughtless ignorant slur, to you.

⚽️

[Footygirl in reply to happytulip]

LOVE IT! Oh happy tulip, so glad you have reclaimed your name with such humour. I laughed out loud! Love the presentation idea. Perhaps we could club together and hire the Royal Albert Hall and stuff it with every ignorant, dangerous idiot we have all come across.

We could sit where the choir sit at the proms, and punctuate the points with raspberries and v signs. I think our points might come across... or maybe not, but nice idea.

So funny.

Keep on keeping on. I do hope your pain receeds, like my hairline soon.

Lots of love

⚽️

[Penelope-Mary in reply to happytulip]

Yay for having your pain acknowledged ! 🏆

It's invisible to others and incapacitating to the suffer.

As for your mother's friend...good grief..that is the definition not only of ignorance but a large dose of nastiness . She should be eliminated along with hapless shop girl ...must be a deep pocket we can tip them into. As much as we laugh it isn't funny, it hurts...a lot .

Thank goodness for this forum

👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼

Go 🌷!

PM

💕