Need Some Serious Help (GARYS case)

[lugnut]

With all due respect, you just had a baby, are probably getting insufficient sleep, have stress at work and now have a flare-up, adding to your stress - and you're wondering why you're sleepy and fatigued? Of course, it's easy for me to say that as an observer - when it's happening to me, I'm mystified! That's why I come here!

[GARYS]

How long have some of you guys who have had this awhile experienced a bad flare? I had a day or two that wasn't so bad then today after a bowel movement here's the burn again. Also started aloe vera (maybe for the second time don't remember since I've been tried everything over the years). Just trying to stay positive and also stretching.

[lugnut]

How long have some of you guys who have had this awhile experienced a bad flare? I had a day or two that wasn't so bad then today after a bowel movement here's the burn again. Also started aloe vera (maybe for the second time don't remember since I've been tried everything over the years). Just trying to stay positive and also stretching.

I've had bad (meaning intense) flares that have last three days, three weeks and three months. Sometimes, they've started with something as simple as an ejaculation or a bowel movement. Glad to hear that you're staying positive and stretching. Think positive and do positive things! And, as hard as it is, find ways to relax. Don't get obsessed about the symptoms, because this only ratchets them up. I know, I know, easier said than done, but to me relaxation techniques are the one thing that are win/win situation - even if your symptoms don't magically vanish, you will be able to handle them better and that, in turn will cause them to diminish. Good luck!

[graeme]

Hi I not been around much. Symptoms have diminished over last few years, however I remember your symptoms been same as mine, almost identical, with that burn after urinating. Let me tell you I've had 2 babies over last 4 years and on both occasions my symptoms came back, both starting in the delivery ward. I'm under stress at the minute with work and tennis elbows and its creeping back. Stress is key here

[GARYS]

Thanks Graeme. How did you get your symptoms under control? Yea we do have the same symptoms. Glad to hear you're doing well. I don't see many of the regulars from several years ago (that's a good sign). Have you had any flares that feel like they took you back to square one when this all came on? And how long did it last?
Thanks to lugnut
Gary

[graeme]

I've had this since 1993 Garys and my pattern never changes. I get a major flare like when it started, which lasts about 3 years, then the 3rd year I go into remission, 95% pain free and stay like this for 2-4 years, then it comes back full on. In between, when in remissions, I get the odd flare which can last a few weeks at the most. Normally down to beer or too much sex or straining.

[GARYS]

I'm not willing to go many months much less years. This time I'm gonna telluride stretch and try to do my external trigger points. I started doing the pigeon pose a week ago and got two good days then it came back. Anyone find stretches aggravate thins in the beginning?

[GARYS]

I tried looking up trigger points on the lower back but it sounded more for back pain. Has anyone ever been treated for these related to urinary issues? The reason I ask is because I thought I was on to something here in St. Louis with a guy claiming to treat and teach about tps. I seen him today and wanted him to check my abdomen and other places from ahip. He flew through the abdomen said he felt none had me roll over to check my lower back where there were some sore spots. I am feeling a little worse since the treatment so I'm wondering if these could relate to my issues and the other question is: do you have to have the jump response for there to be a tp or could it just feel sore or sensitive to pressure?
Thanks

[GARYS]

I have been trying to look up a muscle/ nerve that would connect burning in the urethra to burning in the soles of feet. I have this and thought it might show approximately where part of my problem is coming from but I can't find any connection. Anyone know enough to give me any ideas. Rhonda Katrinos said she had read about a case in travel Simons with the same burning together. Any ideas would be appreciated.

[webslave]

A number of people have raised the issue of a vague neuropathy that leads to burning in the feet and/or ankles. I had a hot patch on one ankle too, a long time ago. Use the search function.

[superuse]

Do a search on tibial nerve. Also ptns (post tibial nerve stim). The tibial originates off the sacrum from the same nerve roots that some of those innervating the bladder/urethra. It innervates among other things the big toe of the foot coming near the surface near the inner ankle bone.
Also search "crosstalk".

--jjf

I have been trying to look up a muscle/ nerve that would connect burning in the urethra to burning in the soles of feet. I have this and thought it might show approximately where part of my problem is coming from but I can't find any connection. Anyone know enough to give me any ideas. Rhonda Katrinos said she had read about a case in travel Simons with the same burning together. Any ideas would be appreciated.

[GARYS]

Anyone else seem to bring things on worse from stretching? If so does it get better? Also what does it mean when your bowel movements are skinny?

[BrettP]

I've raised this before... If I apply pressure to my heels I get bladder pain. Especially if my heels are cracked

[chewydog]

I've had some foot work done and it does help!

[Pete123]

I had a terrible burning in my feet early on...which faded, but every now and then comes back, but not as bad. Also have had flashes of heat and cold in my hands, arms and legs...again, seems to be fading with time.