Hello Everyone
I will try and keep this pointform or it may turn into a book.
-started friday 21st,midnight,pain level 10 plus
-encompassed my entire upper right leg and bottox,not spine,skin was not numb
-cannot straighten leg,or stand on it,need crutches,very sensitive.
-friday was given massive dose of morphine,did not kill all the pain.
-was told to take tylinol 3,s[8 per day] and 1800mg gabapentin,by sunday night,no relief ,just minor easing.
monday night was given oxycodene 325mgx2 every 4 hours,still very painfull , about a 7 now maybe 6
history- uc for only 30 days,went toxic, no prednisone ever.age 47,very fit,j-pouch 2 years old.I was out in 3 feet of snow that afternoon,walked about 500 yards in it,but I,m some what used to that.This started in my sleep,woke me up at midnight,instant pain.I did have hip pain issues after my surgery.
Pain is now totally focused in my knee area,no swelling at all,no redness at all.lookes normal,mild numbness now to touch,not shingles,I had blood work done ,it,s fine
The last emerge Doc thinks I may have damaged the nerve in my leg and it,s now sending pain down to my knee,She pushed down in my groin area,sent me to the moon when she did that,plus when I lay on my back with my knee bent up,I cannot bend leg left or right at all.
I was told to take a anti imflamotory to,But what should I take if I have a pouch?can we take Nsaids?
I hope this makes sense to someone,it really hurts and my doc is very open to input from this site,he wants to make sure he does no harm to my pouch.
Happy new year to everyone
Matt

Hi Matt,

I really don't have any advice or suggestions for you, just wanted to pass on my best wishes for a speedy resolve to this problem.

I'm sure someone will be along soon with some more useful advice.

I hope you feel better soon.

Take care and keep us posted.

Shell

Hi Matt, I'm sorry to hear you're not doing so well. I am experiencing almost the EXACT same thing right now. I have been having the same problem for years - what happens is my legs start feeling alittle stiff at first and then a day or so after my hip/butt hurts (98% of the time on the right side). I am not talking a normal, take a tylonol and it will go away pain...I'm talking, move any part of my leg, and I scream out in pain, and I can't even control it. Pain killers don't even help. After a day of this it progresses to a constant dull aching with the sharp pain taking over when I move (even an inch!) or put pressure on my leg and like you, its a 10+ on the pain scale. Also, the pain feels as if its coming from deep inside because when I massage the area I cannot pinpoint the exact place the pain is coming from, just the general area. This happens to me every few months but the episode I'm experiencing now has been really bad. Its wearing me down to the point where I don't want to move because I know how excruciating its going to be and I keep breaking down and crying. My back/neck/left shoulder blade has also been experiencing the same symptoms. I feel like I've been hit by a car! Does this sound like the pain you've been experiencing Matt? I'm sorry for the essay but you can clearly see that I have alot to say on this subject and would love to get this sorted out. Anyone have any ideas? What about you, Jan?

P.S. I really hope you feel better soon

This is a bit of a stab in the dark but is there any chance you could have a back problem that is causing the referred pain? Your doctor's comment about it possibly being nerve-related put the idea in my head.

Matt,

Could you have bursitis:
- "Acute bursitis causes pain, localized tenderness, and limited motion."
- "Bursitis may be caused by trauma, chronic overuse, inflammatory arthritis (eg, gout, Rheumatoid Arthritis), or acute or chronic infection (eg, pyogenic organisms, particularly Staphylococcus aureus; tuberculous organisms, which now rarely cause bursitis)."
- "Chronic bursitis may follow previous attacks of bursitis or repeated trauma. Attacks may last a few days to several weeks, with multiple recurrences. Acute symptoms may follow unusual exercise or strain."

Or... less likely, osteoarthritis or gout.

I got those suggestions by running your symptoms through the online diagnostic tool at http://www.yourdiagnosis.com

Steve

Hi Cinn
I,m sorry to here you are having the same sort of problem,but to answer your question,YES,I am almost just as you wrote,to the T.As for the pain meds not working,well that points even more towards it being a nerve issue,and with you saying how they don,t work on you either tells me that i,m not alone on this,we seem to be in the same boat.I thing my Doc wants me to try Gabapentin again,he feels I may have a hidden back issue that has been agrivated,Just like Mike mentioned in one of the answers here,So I am going to have that looked at to,Have you ever been on gabapentin yourself.I was and did get some relief from it.I will let you know what comes of this.Thanks for your response too,
By the way,How are you feeling anyway,is everything going ok for you?I hope so
And thank you Mike for your response,the docs are lookin down that road now,very possible .
happy new year matt

hI ELMER
THATS A GREAT SITE,AND THANK YOU FOR DOING THAT,IT,S VERY KIND OF YOU.I WILL MENTION BURSITIS TO THE DOCS THIS AFTERNOON.
I AM LONG TERM CIPRO ALSO,DID I HERE IT CORRECTLY THAT WE CAN DO DAMAGE TO OUR TENDONS,WOULD THIS BE LIKE THAT?
THANKS EVERYONE FOR YOUR HELP, MUCH NEEDED
MATT

From what I see, tendinitis and tendon rupture has occurred in approximately 5% of patients on Cipro or related drugs. However, the greatest complaint is problems in the achilles tendon - or tendons other than those in the areas you mention.

They also state that this effect tends to be more frequent in people who are also on steriods such as prednisone.

http://www.citizen.org/publications/release.cfm?ID=6595

Pardon me if this has been ruled out, but have you had a Doppler ultrasound to rule out a blood clot or phlebitis in one of the groin veins? This would be the first thing I would look at, then nerve damage.

While tendinitis and/or tendon rupture is associated with Cipro, it is not likely to present as you describe. But, I have learned to never say never, so it should remain a consideration.

Yes, you can take NSAIDs with a pouch, but with caution. Watch for GI symptoms and you will have to stop or switch to another type if you develop abdominal pain or bleeding. Some GI docs will say never take them, but it can really tie your hands if you really need them.

Jan

Hi Jan
I ended going back to emerg 2 more times,They did a x ray and I know the first doc mention clots and did a bucnh of exams on me and ruled out a clot.can a visual exam allow him to rule out a clot?Almost every pain medication I take for it does very little.I was never given a doppler ultra sound just a xray and I do know the docs on call were looking for a clot but all ruled it as a nerve issue.Right now i am able to move from room to room with a cane bur very slow and painfully.If I find the corect position when I lay down all pain is gone,but I dare not move or it,s back,I can only stand for about 2 minutes by then i,m at a 10 on the pain scale or more.
Does this still sound like nerve Jan,I am going to see my famill doc on the 2nd to imform him of this.And thank You for your reply,i,m going to call emerg now and tell them I can take some nsaids and to get the script ready for me.
Happy new year jan
and to all

I would not rule out a blood clot or phlebitis without the Doppler ultrasound. I had a subclinical blood clot (undiagnosed) before my surgery that wound up progressing to a full occlusion over a period of weeks. It was diagnosed by Doppler. When I was having unusual pain, one of the first things they did was the ultrasound. Yes, it does sound like nerve pain. Neurontin (gabapentin) would probably be a better bet than NSAIDs for treating it if it was nerve irritation. You may need both.

Jan

Hey Matt, how are things with your leg pain? Have they gotten any better? What about coming up with any solutions? Please keep me updated.

The pain finally went away in my right hip/butt/leg area, then a day later it started in my left one! I'm glad to say that today I feel no pain, but still...this sucks. I'm booking a doctors appointment right now to try and get this sorted out.

Oh and p.s. my surgery went great! I had a really rough time in the beginning but I'm back to my old self again and feel like none of it never happened

Hi Cindy
I,m glad to hear everything is going great for you,those first few months are always a bit of a hurdle but we do get over them.As for my leg,well they have ruled all the nasty stuff out including a clot,what they think it may be is nerve damage and severly torn thigh muscles combined,how I did that I have no clue.I had no clue that a torn muscle can hurt this bad and could take so long to heal,it hurts just as bad as the night it happened.Good news is my pouch is working just awsome throught this
see ya Cindy
Matt

Hi, I also have experienced terrible hip/leg pain. It is kind of like Cindy explained, it's deep inside and can't pinpoint the location - can't "massage" it out. While it was painful enough for my legs to give out and to have to limp, it wasn't as painful as it sounds like you're experiencing. Anyway, the only thing that worked for the pain for me was Vioxx - until they took it off the market! Anyway, I kept getting referred to a Rheumatologist and by the time I had the appointment, it was usually feeling better since it comes and goes. He never actually got a look at me in pain! It comes and goes now, but it's never been as bad as it was a couple of years ago. Have you checked into Rheumatoid Arthritis? That's apparently what I have. Might be worth it to get an appointment with a Rheumatologist.

Hi LH
Thats a very probable answer on this to I ve been told by the docs.One thing there paying close atention to is the possibility I pinched my ciatic nerve while doing the leaning motions we do on the toilet,when I showed my doc,he could see how it was crushing right were the ciatic passes,it does explain the muscle and knee pain,and the fact no pain meds realy help me out.But he does want to keep a eye out for your idea to.
Thanks for the reply,it,s very kind.
matt