Pain :(

[NatalieMT]

I'm sure a lot of us have had experiences with pain. Share? But how bad does it need to get before you say enough is enough...

I'm so fed up of being so darn uncomfortable, despite the level of pain relief I'm on. Last night was the night from hell anyway, from 2am to 4am all I did was run from bed to the bathroom and back again, before starting to throw up at 5am and again continuing to the bathroom at regular intervals. I'm so tired anyway but I just can't sleep through the discomfort anymore. Some days I can't even stand up because it's just too much. I think my symptoms wouldn't be so bad if they weren't accompanied by the pain.

I used to take good health for granted but I certainly don't now.

 

[kasper87]

Pain. Ha. Should be my middle name.

8 years with this crap and im only 21 i can go on forever.
I took the pain for nearly 7.5 years and finally said enough is enough about a year ago.

Went from tramadol to Fentanyl and Vicodin..
The patches barely worked and all I can remember is bad dreams.

Hydrocodone is my life saver and it only takes about 15-10mg/1g apap to help..
Since I am on TPN now.. I only use the bathroom when I wake up in the mourning or EVERYTIME I wake up during the night or day from a nap. I dont know what happens during sleep which makes me use the bathroom every awake. But the pain is bad until i release myself. #2. I can't really eat right now without painkillers.

 

[Wizbit]

I think my symptoms wouldn't be so bad if they weren't accompanied by the pain.

I completely agree with that! When I speak to my GP or GI specialist, they seem more concerned about stopping the diarrhoea and frequent toilet visits than the pain.

The only thing I found to help the pain was 100mg tramadol that I got from someone else (ie: Not prescribed). WHy they can' prescribe me this, I don't know!

 

[NatalieMT]

I'm glad I'm not alone!

I was on Tramadol originally, then went onto the Fentanyl patches. After coming out of hospital middle of January following a 2 weeks stay I was off all the strong painkillers and felt reasonable. It just seems to have gone downhill from there though and in April I was put on MST Continuous. My GP has actually been really helpful and so have pain management at the hospital.

To be honest though I think all parties believe until my Crohn's is under control I'm not going to find much relief.

 

[farm]

I have a high tolerance for pain. The worse it ever got was when I was hurting around a 9 (i've never said 10) and I went to the doc at lunch so he'd give me something stronger than Vicodin. He sent me to the ER because my appendix had ruptured. When they went in to get my appendix they found that about 1 1/2 foot of my colon had colapsed on itself and was riddled with diversticulitits they had to cut it all out.
I'm now on Perc. 10mg 2 4xper day and a pain patch. Somedays I take all 8 somedays I take none to feel somewhat normal.

Crohns can be somewhat amazingly painful. Guts are a very tender thing to have inflammed, torn, colapsed, etc.

I wish us all remission.

 

[soupdragon69]

I agree with what has been said in relation to the pain being taken away and the rest would be easier to cope with!!

I have just spent 2wks in hospital - admittedly under the rheumatology team - but they organised for me to be seen by the "in house" pain management team. During the 2wks they tweaked my meds as I have nerve pain from trapped nerves in my shoulders due to inflammation from the arthritis. I can now take 100mg tramadol 4 times a day AND up to another 2 x 100mg doses of tramadol for breakthrough pain. I find that tramadol doesnt bind or constipate me like codeine does.

I also had a TENS machine during my stay and it was fanastic for me. I know it doesnt work well for everyone but thankfully it did for me. So I am waiting for my new TENS to arrive.

On top of this I take Gabapentin for the nerve pain and am finally after many years able to get quality sleep at night up to 6hrs!!

They have orgainised for the out patient pain management team to review me also in a few weeks time.

The Occupational Therapy team assessed me and provided equipment to make it easier to do things and put less strain on my joints. On top of that I am going to do a 4wk course (a couple of hours one day a week) to do with "joint protection" which teaches how to use bigger joints rather than smaller ones to achieve tasks. Am looking forward to it.

The physio team gave me 7 hydro therapy sessions with exercises for the pool near me and land based too.

The input has been phenomal and I am starting to feel more "human" again and more like my old self. The pain is more MANAGEABLE and I feel I actually have some control over things now.

I can use the TENS on my abdomen and lower back too if I need to.

So to say I appreciate their input during that time is too small in words to do them justice.

I think you all know what I mean though!!

 

[NatalieMT]

That's great soupdragon, it's nice to feel like you have some control finally it's very uplifting! The equipment, course and hydrotherapy all sounds great. I have tried a TENS machine in the past but I found the sensation too weird, I think it's a love or hate thing because when my Mum was having me she said she thought it was a fantastic device.

I do also take Pregabalin, I think it's similar to Gabapentin, it's a very useful and effective medication I find. Glad you are getting on with it too!

For all the pain a lot of us must be in, it's nice to know there is a light at the end of the tunnel somewhere.

 

[Agent X20]

That's good news, Jan

 

[~TN~]

I feel you pain.
(I know, I know terrible joke :lol: )

But seriously, after a night like you recently had the best thing I can think of is sipping some ginger tea & taking the day off to catch up on much needed rest.

I hope you get to feeling better soon.