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Is there a chronic pain support thread anywhere?

(27 Posts)
ginhag Sat 15-Jun-13 17:21:45

Because it is REALLY getting me down and I feel like everyone in RL must be sick of hearing about it.

TheBirdsFellDownToDingADong Sat 15-Jun-13 17:25:48

There is, I think it has something about spoons in the title.

In Gen Health.

I lurk. smile

TheBirdsFellDownToDingADong Sat 15-Jun-13 17:26:49
ginhag Sat 15-Jun-13 17:27:31

Thank you. Yes I just spotted the spoons thread! Although going by the level of fatiguing illness that is going on there, think I would just feel like a whinger!

CMOTDibbler Sat 15-Jun-13 17:56:57

I've got chronic pain too - feel free to have a moan. Mine was doing fairly well due to lovely new drugs and doing weekly deep tissue massage/manipulation and acupuncture but has flared up in the past couple of days. Looking forward to ds being in bed so I can have a tramadol

ginhag Sat 15-Jun-13 18:25:23

It's just shit isn't it. I had an op (sphenopallatine nerve ablation- I may have spelt that wrong) which did amazing things for mine, but the effects wore off so am on the waiting list to get it done again, and more thoroughly this time.

It was so amazing to be almost pain free (though I still didn't get off the amitriptylline...)

I'm rubbish with any of the good pain meds. Took codeine and diclofenac on Monday night and ended up practically tripping with terrifying nightmares.

My body is rubbish sad

CMOTDibbler Sat 15-Jun-13 18:34:10

Disappointingly, considering the range of pain drugs I've tried, I never get any trippy effects. The Lyrica can make me sound a bit drunk which is embarrassing, but its worth it

ginhag Sat 15-Jun-13 18:36:57

When I was on a higher dose of amitriptyline apparently I was like the walking dead (mmm how sexy.)

Have never tried Lyrica. And yes triply in THEORY could be fun, sadly it was not fun and really quite scary.

What pain are you dealing with? Sounds evil.

CMOTDibbler Sat 15-Jun-13 18:43:44

I've got a few sources of pain, but all arising from an accident where I damaged my arm very badly and lost virtually all use of it (can bend elbow and move my thumb a little, but thats it). The worst bit is that I have CRPS which is basically your brain interpreting all sorts of things as painful, and messing all sorts of things up.

Is it cluster headaches that you have?

ginhag Sat 15-Jun-13 18:50:52

Shit that sounds horrible. Poor you. Is there nothing they can do for your arm?

Current diagnosis is sphenopalatine neuralgia but sometimes they just like to go with the nicely vague 'atypical facial pain'. Appears that the nerve ganglion behind one cheekbone has just gone fucking loopy for some unknown reason.

It makes me such a short tempered horrible person. And I'm not, really- at least I didn't used to be!

And the stupid thing is, even after all the tests and scans, somewhere deep down I'm terrified that there is some sinister cause. I just find it so hard to get my head around the fact that I can feel so bloody awful for so bloody long without it being Something Very Bad. If that makes any sense.

There. That was nice and ranty smile

CMOTDibbler Sat 15-Jun-13 20:08:09

I know what you mean about the pain making you a horrid person - happens to me too. DH just brings me pain killers of the heavy sort with a Look.

And it makes a lot of sense about the worry about it being sinister.

Theres nothing more to be done about my arm - have had 5 lots of surgery, 4 of which were trying to fix things and 1 to fuse my wrist so at least it was solid and less bone pain. One bit of nerve regrew, but alas the bit that uselessly gives sensation in the back of my hand, not the bit that moves your fingers.
Now I just get a mega dose of botox every few months to deal with the one finger that pulls right back over my hand. I might get that tendon cut at some point, but it risks flaring the CRPS which could be terrible

ginhag Sat 15-Jun-13 20:29:41

Thank you, it's so nice to have someone understand it! (Not that it's nice you have all that pain though obviously.)

Sounds like a lot to deal with on top of the chronic pain. And yeah, a difficult decision about the tendon if it could make everything else worse. It's that thing where you just wish you could somehow know how it would work out- how the hell can you make an informed decision if you don't know what'll happen?

I had a load of Botox into my jaw muscles (was misdiagnosed as TMJ being primary cause of pain...has now been established that the jaw muscle issues stem from tension caused by severe neuralgia, not the other way round.)

The injections were about the worst thing I've ever experienced (probably because they were injecting into the pain site) and I couldn't smile for 4 months, which was very weird psychologically!

I'll join you I'd that's ok? Doing ok at the moment on paracetamol tramadol and gabapentin,
But during flare ups, the only way I can cope is morphine,
Find it very difficult to talk to people in real life as been ill along time now and very difficult for people to understand, I find it very isolating

ginhag Sat 15-Jun-13 20:52:33

Hello new pain friend smile

Sounds shit. It's just so hard isn't it? I hate feeling like that grumpy strung out person that is ALWAYS in pain. It's just so dull. To put it mildly.

Also <super confessional> I have started drinking too much. Terrible idea with the meds BUT in the short term the pain is lessened. And I don't care about hangovers as I am always in pain regardless.

(Awaits flaming)

CMOTDibbler Sat 15-Jun-13 20:54:34

Hello LargeGlass - it is hard for people to understand the impact of chronic pain isn't it? And as time goes on they can't understand why something can't be done about it either. Fortunatly dh is in chronic pain as he has bone on bone arthritis in his knee and now his hip is going the same way, so he gets it.

Not smiling for 4 months must have been very weird. Sitting in the botox clinic, I've really had my eyes opened to all the things that can be helped with it. The clinic is a bit chaotic, so theres always someone to chat to!

I've had a nice dose of trammy and some anti inflammatories and am sitting with my arm propped up on a wheatbag watching The Voice and thinking about a bath.

Ginhag, must admit having the odd large glass
;) which is a complete no no my drugs, but hard to resist I wouldn't flame you for drinking smile
Cmot thanks I have become quite insular which isn't like me

ginhag Sat 15-Jun-13 21:22:18

LargeGlass thanks. It does concern me though, partly as it seems like I've given up on ever getting better.

And YES to feeling isolated. It's a lonely business.

CMOT I haven't been to a Botox clinic, just had the maxfax surgeon stab me in the face a few times.

pipsqueakz Sat 15-Jun-13 21:23:28

Hello all can I join? I am my husband's carer he has chronic pain due to a condition called gastroparesis.

Ginhag, feel today exactly that lost hope in ever getting better, also had a couple of horrible comments and the old me would have had the perfect comeback but now I just feel my eyes pricking and shuffle away.
Hi pipz sorry your DH going through it too

pipsqueakz Sat 15-Jun-13 21:40:38

Thanks glassof I'm understanding all of your comments and posts And relating to them the frustration the fatigue exhaustion, and loneliness to top it my dh has a ESA assessment soon and I have a mass of questions to answer for him. Why do you have to prove yourself to ATOS. Surely the amount of pain relief my husband is on and tablets for his condition 44 a day plus morphine patches is enough to make that decision! Sorry ppl rant over.

Pips, blooming awful having to prove your illness, would
Just like to give someone's body for one hour to show them
Rather than finding the words

crashdoll Sat 15-Jun-13 22:30:05

You'd be most welcome in the spoony thread gin. While I do suffer from fatigue, I mostly moan post in there regarding my pain. It's very draining.

pipsqueakz Sun 16-Jun-13 11:11:32

Quick question does anyone know if you get ESA support component do you have to fill in questionnaires and go to medical assessments?

pipsqueakz Sun 16-Jun-13 11:13:57

I know what you mean about proving your illness I wish these medical assessors could live with the pain and all that's associated with it. I wish I could give my husband a cure but all I can do is support him and try and help him cope sad

ginhag Sun 16-Jun-13 14:04:59

Thanks crashdoll but tbh even on this thread I already feel like there are lots of people suffering more than me and I essentially need to man the fuck up and deal with it smile

pip sorry I can't answer your question. And sorry your DH is suffering so much, must be so hard for you too.

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