Help: Please, how are you all REALLY... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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Gab63 profile image
12 Replies

Please, how are you all REALLY coping with constant pain? I can't do it any more. Itbeen 6 years of trying to find diagnosis and treatment but nothing has come of themiriadofscans, ultra sounds, PET and CT scans, X-rays etc.. and trying various drugs pharmaand natural.. nothing helps. I'm in constant pain. Acute on chronic pain. Flare ups 6-8 times day/night impossible to relieve. Just a few minutes to an hour of medium relief a day. Surely this can't be my life. No money left, having to share rented house, living on government aid... Godhelp me and others like me. Alone. Not married, a youthful 55 year old, SO MUCH TO OFFER THISWORLD; just wasting away in bed. Can't even get a daily shower. Everything has collapsed. Unsympathetic sister and brother. No other family. All friendsdeserted me long ago. Taking paracetamol and ibuprofen (too many) and oxycodone and cymbalta daily. It's hopeless. Never more than 90 minutes sleep/rest at a time. Depleted. Exhausted. Tortured daily with trauma and foreboding of realizing there's no true relief.even if I could just get a few hours a day. Haven't been out evenfor a coffee for years. Dear God, TRUTHFULLY, how do you do it? I can't anymore. Praying helps me more than drugs. Praying for all of you as well. What is happening to me? Can't recognize nor remember who I was and who is in the mirror.

Dear Lord, have mercy on us all.

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Gab63 profile image
Gab63
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12 Replies
kalecolbe12 profile image
kalecolbe12

I replied to hopeless on this site and I would like you to read that reply because it's hard for me to do it all again please follow some of the suggestions I have in that reply

Gab63 profile image
Gab63 in reply to kalecolbe12

Thank you for your help ((hugs))

Best wishes for your perfect health and wellness.

kalecolbe12 profile image
kalecolbe12 in reply to Gab63

I won't be having perfect health at 65 anymore...despite being pretty fit and working out etc...there seems to be arthritis and other age related stuff cropping up but thanks for the sentiment

Pinky2233 profile image
Pinky2233

Truly take it day by day. You really don’t know the day that the step by step answers and help will surface

Mine started when I emailed every internet organization I could find and out of nowhere a doctor who wrote a bery well known book actually called me with referrals in my area. I had tried everything before that

I have new friends now and losing the oldest and best friends was some of the hardest.

Finding people on your way to befriend and help guide doesn’t always come in the people we used to know. And it comes out of nowhere if we can see if and offer whatever small part of ourselves is left in return.

For income I created a job I could do from home and my life has had revolve around that

Keeping myself mentally busy and on targeted small things however small is extremely important

Getting a proper diagnosis is essential because most doctors just do what they specialize in and if you don’t have that they drug you.

Trust your gut to guide you to the right next step taking yourself in the right direction one step at a time. You are not alone on this site.

Healing is always up and down gradually and hopefully in the right direction

Keep busy and take it one day at a time you will get through

Gab63 profile image
Gab63 in reply to Pinky2233

Thank you Pinky.

Very kind and generous with your thoughts. Much appreciated albeit through tears.

May God bless you greatly and favour you with perfect health and a wonderful life moving forward x

Skye22 profile image
Skye22

I too responded to "hopeless" hope my story might help you. Wish you good health and stay strong!!!!

Konagirl60 profile image
Konagirl60

Where do you live?

Rxmom profile image
Rxmom

Among my Many go to rescues is medical marijuana - only at night but if it’s out of control Use during the day - I find it relaxes spasms very well (good) but impacts cognition & ability to drive (not so good)

Otherwise I think the Valium lido suppositories are most effective to get me through the day. Along with ibuprofen 800mg, oxy 10 (3-4 a day) & Belbuca & I use B&O supp occasionally (belladonna & opium) - not my favorite but part of my drug arsenal.

... and Incredibly, the st Jude stim works (I turn it off to check & pain skyrockets). I’m preparing for a repositioning of one lead & addition of drg - mid October.

I won’t stop trying until it becomes obvious that additional invasive procedures are not productive or can’t provide some incremental pain relief.

Never could I imagine a condition like this.

kalecolbe12 profile image
kalecolbe12 in reply to Rxmom

Can I ask you the dosage of the lidocaine and valium in the suppositories?also do you see a neurologist for the stim or a pain specialist ?and,have you tried Botox ?

STUBBORNGIRL7368 profile image
STUBBORNGIRL7368

Hi, I am the same as you. I'm 50 and for the past 5 years I've lost what truly made me, me! I havea no sense of humor, no laugh. Everything that was once beautiful has been stripped from me and all that remains is pain, doctor appts, surgeries and thousands of dollar of medical bills.

I recently saw a doctor regarding a spinal stimulator for the pain. It is the only thing I have to look forward to. I wish I had away to remove your hurt and pain. Write me if youwill would like. I've also lost all friends.

willemine profile image
willemine

I take meds but also stopped looking for a cure answers and empathy and i took or two years menthal health to the pain integrate it in my life. With acceptance most of the panic and desperation went away and that gave my spirit enlightenment .

Kathcat64 profile image
Kathcat64

I read your message and wanted to respond and let you know you are not alone. My goodness I've only been doing this 2 years, can't bare to think of 6 years. I feel your pain, I hurt all the time. Diagnoses Levitor Ani Syndrome. I live in Washington State and no Dr's here will prescribe pain medication. I'm on a muscle relaxer, Tylenol and ibruprofin and crying while typing because of the pain. Like you my old life is like a distant memory. What I'd give for just ONE GOID DAY. Taking a shower even difficult. I'm down to 97lbs, I'm 64. I'm a wife, mother and grandmother, however for last 2 years not good at anything. My family loves me, my husband tries so hard. It will be Christmas soon, that thought makes me cry. I use to decorate my home so pretty and now I don't care. Can't shop, will have to give money. Please know you aren't alone, seems like so many of us in same boat. Suppose to have Botox injection end of month, was so excited about that. I read on here it didn't help many woman on this site so now I'm anxious, nervous ECT. Bless you honey♡♡♡

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