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Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 2/9/2009 6:37 AM (GMT -6)   
I don't know if y'all remember but I had a post not too long ago about me having random bouts of burning feet - where it feels like I'm walking on a bed of coals.  It went away and would only happen every now and then.  So I didn't really think much about it.  So now enters a new symptom.  Well it happened once a couple weeks ago, I was in the shower and all of a sudden my left hand felt like it was on fire.  I got out of the shower and put ice on it - big mistake!  The ice made my hand feel even hotter and my fingers went numb.  The burning pain was short lived.  So I knew I should make a docs appt but, ever the procrasinator that I am, put it off.  So then last night, I was sleeping sound as a baby,  when the inner part of my upper arms started to burn and it woke me up.  It only lasted a little while so I fell back asleep, then my inner thighs started to burn.  Thatwoke me up again.  Once again, short lived.  And then my left hand started to burn again but this time it didn't go away as fast as the very first time a couple weeks ago.  Finally I said forget it and got out of bed.  And the palm of my left hand is still burning as I type this and my fingers feel funny.
 
I just feel that when I get one thing cleared up, something else happens and I am soooo sick and tired of this BS!  mad mad mad
 
ps, yes I am going to finally call the docs today.  sad
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 2/9/2009 8:03 AM (GMT -6)   
     Yes, they are odd symptoms.  This is not to scare you but just have it checked out.  I was watching Mystery Diagnosis last night and the woman had Scleroderma and her symptoms were very similar to yours.  It took her several years before being diagnosed.  Just mention this to your doctor.  Better to be safe than sorry.  Good luck!  Hope you are feeling better.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/9/2009 10:12 AM (GMT -6)   

Sounds like a nerve problem - could be related to your

 

Secondary Reynauds Syndrome
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/9/2009 10:15 AM (GMT -6)   
I just got back from the ER. The pain and burning intensified 10 fold after taking a shower. It felt like someone dipped my hands in a vat of hot oil but they were numb and tingly at the same time - such a weird feeling. The ER docs didn't know what to make of it and because they were at a loss as to what pain meds to give me (I'm allergic to codeine and of course anti-inflammatories are out because I'm an easy bleeder) so they called my primary and she ok'd the use of Darvocet. Before I went to the ER though, I had already made an appt to see my primary tomorrow at 9:40am. So now when I go see her, she is going to send me for another MRI. I am thinking that the 2 bulging discs in my neck (1 is slightly herniated) has gotten worse.

I seen that one with the girl with Scleroderma and trust me, that has crossed my mind too. However, I think the sharp shooting pains in my neck, headache and nerve pain leads to the bulging discs.

I'm just so fed up. When I start to feel good something else smacks me down. :(
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/9/2009 10:38 AM (GMT -6)   

Sherry - sure hope you primary care doc can get to the bottom of this.  We have been there/done that at this house more than once over the years and I do understand! 

Hugs, ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 2/9/2009 11:40 AM (GMT -6)   
I'm sorry you're having another issue to deal with. I really hate that doctors can't give us answers. It seems weird that the ER would just send you on your way with some pain killers rather than trying to diagnose the problem. I know you're seeing your primary doctor tomorrow but it seems like the ER could've ordered the MRI and done it today. Keep us posted on how it goes tomorrow and good luck!!
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
75mg 6-MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/10/2009 1:33 PM (GMT -6)   
I had the appt with my primary today and she is going on what I feel is the culprit - the bulging discs in my neck. She seems so frustrated because my list of meds are so limited when it comes to pain relief. I told her that I'm sorry to have that one in a million body that rejects medications and she told me that it was in no way or form my fault! lol I like her a lot, she's the best primary I've had. But she went ahead and scheduled me for more epidural injections for my neck. I just hate getting them, not because they hurt (they don't really) but the fact that the cortisteroids they inject give me steroid rash on my face and neck. My face always feel sunburned the day after the injections and I look like it too!

Oddly today, I am not having any trouble with the burning hands. It was so weird yesterday! It comes and goes so I guess I should have this taken care of before it becomes a permanant thing! So I go in for my 1st round of injections next Tuesday.

Oh and my primary mentioned that I can have an MRI in March if my neurologist feels it's necessary. I have one of those HMO's that you need permission to sneeze. So they won't cover an MRI but once a year unless it's an emergency.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/10/2009 1:47 PM (GMT -6)   

red - hope you will finally get relief!

As for you and pain relievers - tell your primary care doc that you know another one just like you - my limit is extra strength Tylenol and was small doses of nsaids before UC.  I have tried about everything - all those with codeine, combinations, ultrcet, Darvacet, etc.  I tolerated Demerol with some help from anti-nausea medications after gall bladder surgery for one day - then back to Tylenol.  Not sure what my knee surgeon will try - I just know it will be no fun!!  My husband has low back injury and has had the injections, infusions, etc.  He cannot have surgery so takes Norco (he tolerates it well) but it only takes a "edge" off.  We found many rugs help and pain patches.  Latest thing he got was a sample of PainVanish - expensive but I just ordered him some more.  Hope you get fast relief!!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 2/10/2009 3:00 PM (GMT -6)   
Sherry...sounds like the burning hands/feet can be kidney/liver related?

Maybe from the 6MP.

It could also be as others stated...raynaud's triggered attack from the hot shower...but seems more progressed since you've not had it before?

or other autoimmune.

I think you should get in with your rheumatologist asap and get checked for either scleroderma or Sjogren's. (could account for many of your symptoms from eyes to joint pains..etc), as well as get enzyme/marker tests done.

There is something called peripheral neuropathy...but that seems to be a secondary symptom from another cause...

have you been checked for diabetes?

What's your B12 levels like...are you taking B12?

My B12 is high...seems possible liver related..I cannot take it.

Sometimes high B12 can cause the same symptoms of deficiency.

Hope you're able to get resolve...but I think all your symptoms can be related...
I think Sjogren's..

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 2/10/2009 10:53 PM (GMT -6)   
Really weird Sherry...wish I could offer some helpful advice.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day
 
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/11/2009 7:32 AM (GMT -6)   
Q, I've had so many blood tests that it's amazing I still have any blood left! :) I've been to the rhuemy and he did several blood tests himself. I even had that one test to check for markers for AS (forgot what it's called). All things came out negative or normal. And no on any diabetes testing. I was reading up on peripheral neuropathy and one of the causes can be from medication used in chemotherapy - in which 6mp could be the culprit. However, I do have the bulging/herniated disc in my neck that can cause the neuropathy also; the bulging discs press on the nerves which in turn causes the neuropathy pain, burning and tingling. I think that I have a horrible habit of curling into a ball while I sleep and I think that the way I put my head pinches the nerves more. I've even had MRI's of my entire body, I've had EMG's (that showed slight nerve reaction reduction in my hands but the doc felt it was from my Raynauds) - heck you name it, I've had it done. I spent sooo much time at the doctors last year that I can actually claim my copays on my tax return! LOL Thanks for the suggestions though. I am going to give the epidural injections a go again because they worked so well last time and if those weird symptoms keep returning I will persue different avenues. As for my burning feet, once again, it's a neuropathy due to my sciatic nerve. It's not severe yet but I have all the typical symptoms of inflammation of the sciatic nerve (pain running down the buttock to the ankle). The intense onset of burning pain in my hands could be from the fact that I have Raynauds and maybe the neuropathic pain intensified due to my Raynauds-but that doesn't explain the burning pain on the inside of my arms and thighs. Hmmm maybe I should submit my story to Mystery Diagnosis when and if I ever find the cause of all this eh? :)

Elaine, doesn't this whole predicament just stink?! I feel as frustrated as my doctors because I can't get relief. It's like all of a sudden my body just doesn't tolerate any of these things anymore. I never had this issue when I was younger. I could tolerate many pain relievers but now, even Darvocet makes me a bit queasy. Now if I take Ultram, Vicodin, or anything with codeine forget it! I end up with cold sweats, shakes, tunnel vision, that weird crackly like sound in my ears and then I vomit.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 394
   Posted 2/11/2009 8:49 AM (GMT -6)   
I'm on Azathioprine and I had INTENSE itching Monday and Tuesday after spending Sunday in the sun. Sun sensitivity, I think, is a side effect of the Azathioprine.

I think it's possible that your burning could be related to the 6MP you're taking since it's so similar to the Azathioprine.

have you been in the sun a lot recently?
12 Asacol
100 mg Imuran


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/11/2009 8:51 AM (GMT -6)   

Sherry - yes, I can relate for sure!  Glad I have not had anything too serious (painwise) before now.  At age 68 and now need a knee replacement - pain relief will be the worst problem I am sure.

Your "condition" sounds a lot like my husband's neuropathy - he has lung cancer and I bad lower back.  He has similar symptoms at times.  He is on Topamax which has helped him the most.  He tried other drugs - Lyrica and Neurontin.  He also had the injections.  He has no neck problems however.

RELIEF - just wishing you all the relief you can find!!  Whatever it takes.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/11/2009 11:54 AM (GMT -6)   
UCinGV - LOL I live in Michigan, the land of perpetual winter clouds. So nope, no sun exposure here! :) But I do know what you're talking about because that does happen to me on occasion in the summer. I don't exactly get itchy in the sun, more like an intolerance to the sun and heat. I feel antsy like I HAVE to get out of the sun and NOW. If I don't, I tend to get shaky, dizzy and nauseas. Never had that before starting on 6mp.

Elaine, Topamax - what exactly is that drug? Does your husband use if for the neuropathy pain? I can't use Lyrica - my insurance denied it because according to them, it hasn't been studied long enough to help with neuropathies and Neurontin turns me into a zombie. Not sleepy just totally spaced out.


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/11/2009 12:37 PM (GMT -6)   

Topamax is a drug for migraines primarily and used for seizures - nerve medications you would say.  Google it and find out the other uses.  One side effect is weight loss but my husband needed to lose and at the dose he is on does not have appetite problems.  Hey, worth checking into.  He gets the prescription from the pain clinic he goes for back pain caused by work accident - worker's compensation.  They did testing to find out if his back caused nerve pain down his legs, etc. 

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 2/11/2009 3:42 PM (GMT -6)   
I'm sorry to hear of your new symptoms.It does sound nerve related Red,i just hope that they can get it under control soon for you.It;s a nightmare that you can't take some of those stronger pain meds when you are in pain.
        Could this  be fibro related? I'm praying away for you Red, hope you feel beeter soon.
                    Marty


  



       
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 2/11/2009 4:03 PM (GMT -6)   
     Sherry...what dosage of the 6MP are you on?  I cut mine down to 50 mgm one day and 25 the next.  I felt lousy on the 75 mgm, not to mention my WBC was down to 2.4.  I have no idea if this is related to 6MP or not, but the bottom of my right foot, below the heal hurts when I walk.  At first I thought it was my shoes..boot style.  Then I started just wearing sneakers and it still hurts.  Could this be neuropathy?  Gettin old sucks...but you are young!

62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

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