Achy Body/Stiff Joints

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ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 5/25/2009 6:12 AM (GMT -6)   
I am more or less in remission after a severe flare. I had been taking prednisone and 6 MP for a while, but am now off of both. Currently, I am back to where I started before the flare with just a maintenance dose of sulfasalizine. However, I am currently experiencing a case of creakiness. In other words, my muscles and joints are stiff. If you ever played/play sports, it feels like the first few days of practice when you are sore all over and re-discovering previously little used muscle groups. Once I start moving around it feels better. As soon as I sit down for a few minutes, I practically need to be levered up.

Anyway, I thought at first it was the medications I had been taking. But I am not so sure now. My GI thinks it is UC related and that I should see a rheumatologist. I was just wondering if anyone else has experienced these symptoms and how you were able to achieve relief.
Diagnosed with UC in 1990.

Current Meds: Sulfasalizine (2 g), Rowasa (now and then), Folic Acid (1 mg)

Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.

Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/25/2009 9:06 AM (GMT -6)   
That described my morning!

I use ice a lot after any activity, and admit to taking Aleve now and then. I know I have a few slightly bulging discs. My "creakiness" is more than just that, I think, but my MRI didn't show any arthritis, thank goodness.

I had two epidural shots for back/sciatic pain earlier this year, when nothing else (chiro, myofascial, physical therapy) would work. But I believe that is really only the answer for acute pain, not something chronic. I had walked 18 holes of golf and it had really irritated my back.

Are you drinking plenty of water? I notice when I get dehydrated, I ache worse.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 5/25/2009 3:04 PM (GMT -6)   
I've heard raw milk can be dangerous because it isn't pasteurized.
diagnosed 1/09 with colitis & diverticulitis
 54 yo, colazal, fish oil, synthroid, cymbalta
good results w/ acupuncture


quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 5/25/2009 3:08 PM (GMT -6)   
I won't even comment in your ideas of raw milk, but I do think you should have your vitamin D and calcium levels checked.

q
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


nightcrawler
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/25/2009 3:39 PM (GMT -6)   
i stopped all medication because of these pains.

Id spend days in bed, and when i need to use the washroom, i find my self, asking for help to sit down, and even then, id have my legs propped up, so that my knees didn't bend.

I was also taking that salphizene what ever it is, those orange pills, i stopped taking them, and then the pain went away.


BTW im now 22... so it cant be arthritis.

ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 5/25/2009 4:41 PM (GMT -6)   
I have been taking sulfasalizine for twenty years now, so I don't think that is the problem - although I do hope to get off it in the not too distant future. I guess it could be residual effects of other medications I have recently taken - perhaps in combination with the sulfasalizine - and it just takes a while to work itself out of my system. We'll see.

I do believe I am staying well hydrated, especially when on the golf course. I'm lucky to get in 9 holes without feeling worn down though, and I don't even have bulging disks! Peety, you must be one tenacious individual. I admire your grit.

Regarding raw (or real) milk, any food can be potentially problematic if not prepared properly (spinach and peanut butter come to mind). I have no qualms whatsoever about raw milk - just the opposite. But that is the subject of a different discussion.

Guess I will be seeing that rheumatologist. Thanks for the input ya'll.
Diagnosed with UC in 1990.

Current Meds: Sulfasalizine (2 g), Rowasa (now and then), Folic Acid (1 mg)

Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.

Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


RH_Texas_Gal
Regular Member


Date Joined May 2009
Total Posts : 367
   Posted 5/25/2009 5:34 PM (GMT -6)   
I too am achy a lot ... I had two rounds of blood work done and found I was severely anemic and my vitamin D counts were way low ... I have been on iron 3x a day and vitamin D 2x a week for about a month now. The achiness is better but I still have it. Luckily it is alleviated by hot baths and tylenol.

My GI doc calls these joint aches and pains peripheral arthritis, a form of arthritis which does not permanently affect the joints. Because UC is thought to be an auto-immune condition, my GI doc believes that is why the soreness exists. He just told me to do what I would normally do when I had aches and pains from exercise or over exertion. A rheumatologist told me (yeah, I got an opinion) said she could give me some drugs that would take the edge off but likely will not make it go completely away. I opted to NOT take any drugs for it because I am tired of pill popping. When it comes to a time when I cannot work my way through it, I will reconsider.

ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 5/26/2009 5:23 AM (GMT -6)   
Thanks RH_Texas_Gal, that makes a lot of sense. Was your rheumatologist suggesting this was a permanent effect? Or one that was contingent on controlling the auto-immune response?
Diagnosed with UC in 1990.

Current Meds: Sulfasalizine (2 g), Rowasa (now and then), Folic Acid (1 mg)

Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.

Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


RH_Texas_Gal
Regular Member


Date Joined May 2009
Total Posts : 367
   Posted 5/27/2009 4:49 PM (GMT -6)   
definitely contigent on teh auto-immune response ... the rheumatologist and GI doc both said the intensity of the pain and achiness will come and go depending on how well the UC is controlled. I definitely believe that is the case - at least with me. Right now, I am doing ok, not great, but ok and don't have near the amount of pain that I did in December when I was hospitalized. My UC was in full flare at that time and I could not lift my feet up enough to step up a curb!

I am looking into supplements for joint health to see what might be beneficial. I also have been using my juicer daily for the past two weeks making fresh juice from a variety of fruits and veggies and have found it to be helpful as well. I get a lot of nutrients this way without worrying about how I would have to digest them in regular form!

sickofitall
Regular Member


Date Joined May 2009
Total Posts : 251
   Posted 5/27/2009 5:40 PM (GMT -6)   
Just wanted to let you know this was my same response when I lowered my prednisone.  I've had colitis since Dec. 2008, they are not sure why UC or CD.  I was put on prednisone for 40mg for 7days, I was fine.   When I lowered to 30 for the next 7 days I ended up in the ER.  I have never had a joint pain in my life!  and my knees felt like they were on fire.  I could not walk and ended up in a wheelchair.  Anyway the ER said it was Rheumatoid Arthritis.  I had to laugh.  I'm 28 otherwise healthy very mobile individual.  You don't just wake up with arthritis.  Anyway I was in sooo much pain and needed answers so I kept that appt and saw the Rhumo.  He said it was prednisone withdrawal symptoms and that it would eventually go away after I finished the prednisone.  I just finished yesterday and am waiting to see what will happen.   My gastro. by the way said there was no way it prednisone.....  But I can tell you that the prednisone was the only changing factor in my body.
Just finished prednisone taper of 40mg in 6 weeks.  We'll see if it works.


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 5/29/2009 11:34 PM (GMT -6)   
sounds like fibromyalgia or a case of chronic fatigue syndrome. only way to know is by visiting a rheumatologist.

IMHO, UC and these conditions are interrelated
Pharmacy Student, Class of 2009.  Diagnosed 8/99.  Suffered for almost 10 years.  I am currently on the Specific Carbohydrate Diet and am nearing remission.  I feel fantastic!    I have lost so many years to this disease.  I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.  My goal is to open up a pharmacy and take care of my patients(particularly explaining what the drugs do to you), compound special medications, and have a great practice. HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!  (In remission since 2/15/08)
Meds 3200 mg Asacol, 2.5 mg Prednisone.  Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications!  For me, diet works...


houseguest
New Member


Date Joined May 2009
Total Posts : 16
   Posted 5/30/2009 5:49 AM (GMT -6)   
Im a guy, and One of the lucky few to have fibromyalgia. It is brualt. Mine is hard core. I can feel like Ive been palying football withthe bears all day, and I also have MS types weakness and numbness. I have some unknown auto immune thing. likely anylosing/ or undifferentiated spondylitis. I fit the symptoms. I also have UC that comes with it in a nice little gift package. Yeah me.

Recently I had an attack of some intestinal thing that scared the hell out of me, it went for two weeks until I banned gluten and milk form the party. And I was giving the only thing thats ever worked like a miraculas cure on me VSL3#. Worth every sent. I think its like 75 cents a cap. 40$ a 60 count bottle. Other pro biotics, did nothing.

Anyways, this sounds like fibromayalgia, mine just showed up, completely out of no where. A year after my other problems with the auto immune showed up. It can hurt, it can burn. It can weaken and numb like MS. Its neuro-muscle, and it can also feal like aurthritis. And Im one of the few who cant take the lirica, a great med.

It made me halucinate. Like in the exorsisim of emeily rose, when shoe looks out the window and the sky look ultra scary. So I deal with intense pain every day. And since Im on the medical card, out of work mostly and Im a young guy, they treat me like slime and give me nothing.
But its alright, my stomach cant handle most pain meds anyways. Something isnt right in there.

I cant even drink dark soda. And they didnt see anyhting in my upper GI.

Sorry, get checked for fibrmyalgia. Its sounds like its the problem.
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