Burning Pain..desperation

[diamond]

Not sure how much more i can take of this excruciating burning pain all over my body 24/7. I literally am at screaming point all day and night and barely been out of bed for weeks now.

I also have Interstitial Cystitis and vulvodynia....basically burning up in your external and internal lady bits, bladder, urethra, pelvis and bottom 24/7 too and like Ive been kicked by a horse at the same time ...and doubled up with stomach pain on and off all day too.

Nothing is giving me any relief...warm showers...ice, or hot water bottles and the pain is making me throw up most days. I've resorted to trying again all the meds i hate taking and haven't worked so far..but Im giving them another shot in desperation.

These last 2 years have been a nightmare much of it like this and keeps declining.

I long for sleep as brief respite...but lucky to string 2 hours together only to wake with pain still the same.

Thanks for letting me vent i just don't know which way to turn any more.

 

[carolinda]

Are you taking any prescription pain meds? They are good if used in moderation with a doctor's care.

 

[diamond]

Yes i am but nothing so far has helped.

Ive had fibro for a decade but originally it was pretty bad but nothing like this.

 

[Tipnatee N]

After my ovaries were blown up to the size of soft balls and it became Ascites problem where it was crushing my livers, lungs, and kidneys. I had to stayed in hospital to drain it out of the side of my stomach with long excruciating treatment with no rest for a whole week of tortured before they finally managed to make it stop crushing me to death from inside out and missed dianosed me with ovarian cancer ( almost have to chop them off )

That's when all the extreme burning pains sensation started from inside and out along with my daily panic/hyperventilate attacks.

Ice help a lot but It's so painful to have to keep dumping my self in the ice bath so I often use baking soda to lower the intensity. I take baking soda in my bath every single day now . The burn is less than it used to, still burning from times but doesn't push my panic button every single time like it used to.

I only found out about my high level of acid problem through my crumbling teeth so after tried to use baking soda to lower the acid in my saliva, from that point with my acid from my body I tried with bath later and many of my burning problems become a little less aggravating .

Baking soda has high anti-inflamatory property while acid producing more inflammatory .

I also use 5% or 6% lidocaine gel I get online from tattoo shop for use internal numbness from my eyes ears and nose with no alcohol mix. It safe to use and it works very well. I don't know if I could say this but they also sell the high dose numbing lubricant for the internal pains . The dose are so high and effective. There are even video online showing people how to chemically extracting lidocaine from them cause it's strong and cheaper than any other lidocaine product out there.

I guess all drugs out there are all about the packaging in the market than the dose use. :mrgreen:

 

[diamond]

Thanks Tipnatee yes i drink a solution of water and baking soda 2 or 3 times a day ...thanks for the other tips.

 

[Tipnatee N]

wow I only drink once a day. I like soaking in it more for the target area.

Oh gosh I almost forgot the most new and helpful stuff I just tried recently how could I forget! . Some people recommending me using preparationH , the stuff they use for hemorrhoid relief along with the lidocain product to quickly lesser the burn inner sensation. I don't know what brand they sell in your area but It's the hemorrhoid cream and hemorrhoid suppository . And it really works! when my inside burning out of control. I just add some lidocaine product on top of that suppository then use it where it hurts cause it stay in better , with additional of wearing some pad to catch the leaks. Wow it was so much better than just numbing alone.

Hemorriod products are very useful , so people still swear by the cream that it help the puffy eyes problem and clear the eyes swelling problem in very short amount of time. Sensitive area need sensitive products.

 

[vickythecat]

I wish I had any advice to give you....concrete advice that would really solve this horrible suffering you are going through.

I can only remind you what you already know and am sure have tired; try putting on some nice calming music while in bed, or turn the TV and just listen to the voices you hear. Try to focus on daydreaming; go back to the best holiday you ever had, try to remember where you walked, what you ate, what you were wearing. Or watch funny kitten videos for as long as you can.

Taking away the focus away from the pain is often the only thing that works for me in times of excruciating pain for me. Even if it is just for a minute or two, 'forgetting' about how miserable you feel can make you stronger.

A gentle warm hug.... (and healing purrings from all my cats over here )

 

[andreap]

I have this periodically.when I do I can not function. Getting decent sleep and getting out of bed is horrible. My feet feel heavy and I feel an over all sensitivity and just look as bad as I feel. I take oxycontine long term 20 mgs in the morning with 665mgsx2 of acitomeniphen (Alvedon in Sweden) This is a prescrition dose. Then I lay in bed and force, literally mentally shove myself up and even if my clothes are wrinkled or I have to stay in my pajamas as I am too weak I go to the bathroom, splash water on my face and brush my teeth minimum and have a cup of coffee. I can NOT stray from my diet or I get sick, each and every time and have more symptoms. am so sorry to hear how badyou feel as well as so many others. It is just unreal how bad we can feel and that there is nothing we can do but rest. I also have a sleeping pill but if I take it everynight it becomes useless so I am trying to hop over it. I also have diazpam 5mgs as needed which helps me with stress and muscle contractions. Big hug from Sweden/ Andee aka Andrea

 

[Tipnatee N]

Burning pains all over is something I still can't find any helpful tips to help my self right along other. Even reading other people suffering my heart sink to the bottom. Such a horror this pains really is. Andreap I'm so sorry for having to deal with so much horrific pains, Diamond I wish I could fine anything more to do for you but I'm so lmited, and Vicky you are so sweet in every words. xoxo to all of you.

I just remember the first year that it happen I had to deal with it was during summer and I could hardly move at all cause once I move the burn gets a whole lots worse. I can't control my body pains , so sore, so burning , I bloated stiff , stomach pains , nauseous, feeling muscles weakness, horrible fatigue, my body starting to buring up like bad fever, like a horrible hot flash plusing all over me. I kept getting panic attacks. Once the winter started I had a deep desired to buried my self in the snow , my head still painfully cold but my body was on fire. I just wanted to numb everythings away. Just covered my face , put a carot stick on my nose and I'm good to go as a christmas decoration.:-(

 

[diamond]

Tipnatee ....today's funny image has me lol again!

Yes the vibrating burning sensation deep in the muscles and joints also creates throbbing and stabbing plus joint stiffness and generalised weakness ..that heavy feeling where you can barely pick your legs up....or hold a cup without resting your arms on your body for support.

If only there was an OFF switch!

Maybe i will hunt around and see if there is a spare electric socket from when we did my house refurbishment and flick the switch on and off a few times ....maybe that will be the magic switch hidden in the cupboard all these years!

I mean this started out of nowhere so why cant it just stop....just for a day would be a miracle right now.

Thanks for all your contributions..so appreciated!

 

[maureen in mukilteo]

Sorry things are so bad for you now. I have the bladder thing. It got to the point where my urethra was burning and it felt like I had to pee constantly. I used to sit on a heating pad. When I started on gabapentin it almost disappeared, at least the worst of the sensations did. If I stop the gabapentin, the pain returns. If you haven't been prescribed gabapentin yet you might want to give it a try. Recently things got worse and it felt like an infection of some sort. I was diagnosed with postmenopausal atrophic vaginitis and prescribed estrogen cream to rub into my urethra twice a week, vaginal tabs of estrogen and a pessary. In a few weeks the pain that area was mostly gone (no area of my body is totally pain free). I don't know how old you are but if you're my age and not on estrogen replacement, it's something you could try.

 

[diamond]

Thank you maureen i have struggled with this for a few years but yes i have just hit the menopause on top. Thank you for the tips and for sharing.

How did you find the gabapentin. I tried low dose but had horrible side affects but maybe i should persevere longer. Did it help your body pains too?

LOL yes that's me too sat on a hot water bottle or lay with one at the front and one at the back. Not a pretty picture.

Its not quite the image i hoped for at this time of my life!

 

[Tipnatee N]

And I thought I was the only one that kept sitting on the hot water bottle or replace my underwear with small heating pad

Some time I get too shy to say it out in public, but I've already forgot on how wearing the undearwear or undergarment feels like. For so many years every parts of my body are still so painfully sensitive especially any irritation will seriously stress me out to no end and there goes the chain reaction.

I took estrogen and estrogen supplements for a while and it help when it felt like my lady parts was gonna fallen off of me. I often dream about it fallen off while I was standing or walking casually .

I was on pre- menopause for more than 2 years before it suddenly period decided to came back with vengeance. But during my pre-menopause time it was hell around that area do to fibro and it throbbing me to no end.

 

[lyrin]

Have questions for you guys. Are these issues you mention separate from fibro? Part of fibro? Did you start out with these things or did you acquire them later? Is it menopause related? (I don't know how old you guys are). I'm curious as to whether I should expect things like this.

 

[diamond]

Mine started 2 years into fibro out of the blue years before menopause....it was 2009. I have just stopped my periods these last few months and had no peri menopause symptoms until this year.

Yes Interstitial cystitis vulvodnynia and IBS migraines are many things often are linked to fibro...all unexplained conditions.

It doesn't mean you should expect them many people don't get them.