Has anyone Else come across this

[rhs]

I was diagnosed with Chron's disease at twenty three after a bunch of tests done by my GI. I had lost tremendous amounts of wieght rapidly. I was given a choice of prednisone or an operation. I opted for the prednisone. While dealing with it, Pyoderma gangrenosum showed up on both of my lower legs. My dermatologist gave me prednisone again to try to help it. When my stomach was hurting I was taking 100mg in the morning and 100mg at dinner for about a year.
The problem became so bad on my legs that I was sent to a hospital for IVIG transfusions and it seemed to help get the sores on my legs under control.

All of the above took about 10 years to get through.

For the last 4 to 5 years I think I have been ok no meds of any kind. The only thing that would puzzle me is my right side would give me imense pain occasionally.I have a job were I lift alot and is labour intense. I would wake up in the middle of the night after a hard days work with major leg cramps were I thought the musle was going to come out of my skin. I went to my GI and we took bone density tests and nothing showed up.

Now again after 3 years I have major lower back pain and my right hip is at it again. I thought I had lifted something wrong but this is way to long.

I am tired all the time, my back wont let up tried hot and cold and I seem to be stiff all the time. I am a hard worker and I have a labour type of job but this has just slowed me down to a turtle crawl.

problems.

putting on clothes.
turning on shower.
went for a walk and had to be picked up by car.
seem to have lost my strength
Toss and turn at night because of pain
Hard time sleeping on my side
while standing brushing my teeth have to hold on to the counter top.

Is this some kind of crazy Arthritis???
Going for ct scan soon and to see a rhumatologist..

Thanks for reading and your advice.

 

[Astra]

Hi rhs
and welcome

just a thought - are you constipated? when was the last time you had a BM?
I ask because I had these pains, hip, lower back and lower right abdo. this was back in January, I couldn't move at all! couldn't lie down, sit, stand, I was crying! My GP came out and got an ambulance, and straight to A&E, I was blocked!
with these excruciating pains, I started projectile vomiting too! They gave me morpheine and codeine Phosphate, IV hydrocortisone and Pred.
having said that, I suffered terrible joint and muscle pains when I came off Pred, hips, thighs and knees mainly.
hope you get some relief soon and answers!
someone will post about arthritis, I'm sure!
lotsa luv
Joan xxx

 

[kello82]

as far as the leg cramps...i would pay attention to your pottasium intake as well as hydration. deficiencies in both of those are common with crohns and can cause some badass cramps.

you said you were on 100 mg of pred. what was your taper like when you came off of that? how long ago was that?

and with your back hurting, it could be a crohns related inflammation called Ankylosing Spondelisomething haha its something like that, i dont really know too much about it but there should be info about it around here. i know that one of our members Gojohnnygo deals with it.

good luck & welcome to the forum by the way =]

 

[D Bergy]

Lack of either Magnesium and/or Potassium can cause muscle cramps, and so can dehydration. I just had all of my quad muscles cramp up from a long bike ride, in which I became temporarily dehydrated. One half hour after drinking a lot of water, both legs quite cramping at the same time.

The PG is likely caused by a pathogen indirectly, and the Steroids just allowed it to thrive all the better. Steroids can cause the body not to react to an invader, but it also dampens the immune response allowing it to progress. It is a double edged sword in this respect.

A super safe, and often effective Crohn's and Arthritis treatment is Low Dose Naltrexone. I use it for Crohn's and it works very well for me.

Ankylosing Spondylitis is one form of Arthritis that affects the spine in particular. Low Dose Naltrexone is also a treatment for that condition.

Check it out at http://www.lowdosenaltrexone.org/

My right hip used to give me trouble also. I have been pain free for over two years now. I am not sure that the LDN was responsible for the pain going away, as I have used multiple treatment methods, but it is likely it did resolve it. I am assuming it was a pathogen, that no longer exists thanks to the immune system boosting effect of the LDN.

Dan

 

[DustyKat]

Hi rhs and :welcome:

It looks like you have already received wonderful advice, which is just as well because I don't know the answers to your questions! :eek2: I'm glad you found your way here and as you can see there are many experienced and knowledgeable people that know what are going are through. Please keep us posted about how you are getting on and I do hope you can get things sorted and start to feel better soon.

Welcome aboard!

All the best,
Dusty

 

[CrohnsSucks]

Pottasium, B12 and iron defeciencies are causing me some of the troubles you describe, but should have shown up in your blood test.
Have you had a comprehensive blood test lately? The last one I did I was just able to go out of the house about 10AM and had not eaten or taken any supplements. I felt just like you when I couldn't make it walking down my street at 10PM to the beach. I made it 3 houses down and had to hold on to my wife the whole way back. Not a good feeling at all. I'm 250pounds at 6 ft, and she's nowhere half that, so this was not pretty. I also work outside and I travel a lot everyday on the road as an A/C&R technician. It's also record heat right now, so it's really hard. I got real down and severe depression kicked in because I couldn't even walk much less make a living. I've been on Pristiq for 2 weeks and it helped some but not enough so I did a little research and found that most of your serotonin comes from your guts so I started adding a natural amino acid supplement, 5HTP 100mg capsules and the last 3 days doing it have been wonderful. You can get the 5HTP capsules just about anywhere to try them and see if it helps. But I still have to take a weekly B12 shot, Rx Iron pills daily, Rx Pottasium pills every other day, and probiotic pills, plus the AsacolHD, and Lomotil as needed. When I started the Prstiq I started getting much less diarreah. Enough so that I haven't taken a Lomotil in over a week now. The 5HTP really does seem to be the final key this time to me feeling better. I say feeling better because I know something is still very much wrong with me, but I can go through the day with more energy and a whole lot better outlook on life, which for me, seems to be helping.