Been away from here for a while, but need support

[gindy]

Things are really tough for me atm, I'm in so much pain physically that it's effected my mental well-being 😟 to top it off my Dad just passed away so I'm here again wide awake..

I hate insomnia brought about by pain. I can't up my oxycodone dosage anymore as it's already quite high and the pregabalin has started giving me an allergic type reaction. Swollen lips like I've had collagen filters (I know if it weren't as ridiculous I'd be grateful). Hah at least I can still joke about the unintended trout pout I'm sporting 🤣

So guy's, tell me it could be worse. Make me laugh or even angry. Anything to take my mind off of my crapfest of a pain overload,,, please?

[Hidden]

I've been looking for things to make me laugh, such as old Carry On films...

Maybe your dad would have liked them too.

Major sympathy anyway, and let us know what helps a bit.

[Kevyneg]

Gindy, am so sorry about u losing ur father. Very hard for a girl to lose her,"Daddy" ! I still miss mine. I found some articles on the research that has been done on this whole group of autoimmune cap we,as ll have. They discussed the breakdown in the balance of the body that happens. In short all the bad stuff, Free Radicals, seize the opportunity to take charge and slowly over time we get sick. I have been taking the 5 Antioxidants that were stated to be the answer to that imbalance. I am feeling much better. I still have the neuropathy in my toes but it is not,as constant. I am convinced this is treating the cause rather than the symptoms. I refused to take any of the medications that had do many side effects.

The antioxidants I take are:

Astaxanthin, Resveratol, Ginko Biloba, Co-Q10, Glutathion.

(Astaxanthin and Glutithion seemed to be the biggest players in that list) I try to take them daily but usually do 5 times a week) this whole thing is a cap shoot and this is how I deal with it. I am convinced .

[gindy in reply to Kevyneg]

Thanks guy's, I guess I've just lost my way a bit. After reading some of the info again that I found when first joining up, I realise I've let the 'looking after me' resolution slip a bit.

Instead of resting up before the big pain hits, I've been trying to recuperate after pushing myself to do things the old Gindy could do. The new Gindy who's illness stops her from powering through, and being the 'strong one' knows this lol.

So, I've made myself a renewed promise to use the knowledge I've gained from this forum. To make sure before looking after everyone else, that I take care of me. I'm of zero use to my loved one's if I'm curled in a ball in pain or just mentally exhausted too.

I'm ever grateful to the ppl on this site, and I'll be popping back in more often again.

Thank you my SRUK family, you rock!!!

[LucyJean in reply to gindy]

You know that on aeroplanes they tell you to put your own oxygen mask on first before you look after other people...it is a good analogy! You have to look after yourself and make sure you build in recovery time to your schedule. But, we all know this is easily said, and not quite so easily done. We tend to think that physical exertion and stress are the key players in illness and exhaustion but the emotional stress and worry of life is just as big a drain on our reserves. You are bound to be at a lower ebb and you just need to double up on the self-care. Expect to feel low, and allow yourself to experience all the emotions that will come up at the moment with your grief. They are normal and natural so don't try to stuff them down and try and push on regardless. Be like a bear...hibernate for the winter and give yourself time so you can emerge in the 'Spring' feeling so much better.

Big hugs

Lucy x

[Maryjcl in reply to gindy]

Aww so sorry for ur loss, hope u find strength and feel better soon, sending hugs xx

[Sharonmcallister]

Sorry to hear about ur dad, keep ur chin up keep plodding on and do look after u! God Bless.

[wednesday]

Thoughts are with you on the loss of your dad. Take care of yourself x

[Hidden]

so sorry to hear of your loss.i was interested to read that you had swollen lips,cos of your meds

that is how my lips are but i mine isnt down to meds-i wonder if its a raynauds symptom?

[gindy in reply to Hidden]

Y'know it could be but it does seem to happen when I take my gabapentin as prescribed which is 200mg pm, and 75mg am. I don't often take it like that as the next morning my (usually top lip) is often swollen and feels numb a bit like after an injection at the dentist..

Weird feeling and a trout pout lol 😆

[Hidden in reply to gindy]

i have never been prescribed gabapentin mine is my lower lip,

not sure i want to be on gabapentin-my dog is prescribed it for her spondylitis and she is losing her fur -comes out in clumps -!!

[gindy in reply to Hidden]

Haha you'd be surprised how many human meds are also used on animals. It's not unusual.

I did however miss-type and it's pregabalin not gabapentin. They're the same family, pregabalin is like gabapentin's big brother. It's stronger and more effective at stopping neuropathic pain.

Since I was diagnosed with SSc, then experiencing the chronic pain, I've studied up on pain meds of all types. I've probably been prescribed every family of painkiller throughout the years. I don't think the swollen numb lips are unusual as it's definitely listed as a possible side effect. I wouldn't be shocked though if it was associated with SSc also.

Be interesting to hear if any other SSc CREST sufferers are experiencing these symptoms?

[LilaJoe]

Just to say so sorry for all your pain and distress. Lila

[gindy in reply to LilaJoe]

Thanks Lila xx