Mix of stuff. Not even sure where to post this

vanessavyMember

So my pouch has been OK for awhile. Been on Tindamax.

I have FAP so I always have to check my thyroid and all that jazz. Last scan was normal. Blood work is always normal. I am running out of ideas and doctors.

I have suffered from leg cramps since I was a kid. Lately my leg muscles are constantly in a spasm. I am hydrated and all electrolytes are normal. My Gyno says I am ok too. I am going here on the 10th for some answers! Everyone is clueless http://my.clevelandclinic.org/..._center/default.aspx

I have had a migraine for almost 2 weeks now. I am always HOT as hell. I have my a/c on 65 all day long. I can't handle anything over 70 degrees. I am also STARVING like that type of starving you almost feel violent if you don't consume food that very moment. Has to be hormones, right? Or did my colon being removed just ruin me? :-/

I went kayaking Saturday and my pain was so bad today I can't walk up stairs. WTH! I was weightlifting like a boss 5 months ago, now I am walking like I am 100 years old. Over the pain.

On a side note. My pouch pain is better after having more Celiac Plex Nerve Blocks. Dr Cheung is rated #1 in the world for pain management and he is at CC. So glad Shen told me to see him. Cut my abdomen pain down to about 40%. I can't feel the gas moving my guts around. That alone is amazing. 15 minutes for the procedure and a 6 hr drive is worth it.

I am going to see a new Endo at CC. Had to be a reason I am 35 lbs over weight and work out like a beast when I can and eat about 1500 calorie a day diet. I have had most of my stomach removed and colon. Another poucher mentioned Cortisol issues? Hashimoto?

I wish there was a one test for all. Going to so many doctors is exhausting!

7/29/139:07 PM

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Jan DollarModerator, RN, retired

Gee Vanessa, that is such a hodge-podge of things, I have no idea. I have leg cramps all the time too. Comes and goes. Have them daily for a few months, then I am OK for a while. Labs are always great, not dehydrated. One doc told me it is muscle fatigue and not stretching enough. Who knows? The other stuff, I have no idea if it is all related, you're crazy, or you have a brand new disease they haven't discovered yet! Hopefully, someone will be able to connect the dots and make some sense of it all. It sure does sound endocrine though, at least most of the symptoms.

Jan

7/29/139:35 PM

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skn69Member

Could it be some sort of early onset menopause? A lot of the symptoms fit...the exhaustion, hot flash or not supporting heat, the unmoving weight issue in spite of the high level of exercise...you have been through so many medical issues that they could have pushed you over the edge...? unless you have already had a hysterectomy in which case I am at a loss for you too...could be a combination of thyroid and hormones or another combination...
Sharon

7/29/1311:15 PM

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vanessavyMember

I had Novasure done back in 06 so I haven't had a period since. SO far no blood work shows I am in early meanapause. I feel like it though! The leg spasms most doctors just give up and say I have "sore muscle syndrome!" Give me a break.

I get rolling charlie horses and they hurt to touch. Legs are so frustrating. Maybe CC can figure it out since nobody else can. The hunger part is just nuts and extreme fatigue.

7/30/1312:02 AM

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LesandiegoMember

I have not had a period in 2 years, but I still wake up in a puddle of sweat. It is usually worse when I eat dairy at night, so I wonder if there is some sort of connection with a mild pouchitis.

However, last week when I was digging in the yard, I suffered severe toe cramping. I could hardly walk and when I looked at my toes, they were stiff and stuck in all kinds of weird positions. Cried like a baby it hurt so much. Finally subsided about 3 hours later after laying on the couch as straight as possible and not move my toes at all. I am also suffering dizziness upon standing and when rolling over to my left side in bed.

7/30/138:18 AM

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Scott FMember

Did the onset of symptoms coincide with any new meds (perhaps the Tindamax)? Once in a while meds behave very strangely, new ones more often than familiar ones.

7/30/138:50 AM

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RLCMember

I am not going to get into all my ailments, as well. I believe when we have lost a vital organ (colon) we have also lost so much more! I have adopted acupuncture to help me out with all my problems. It has helped me out a tremendous amount! I went into menopause right after my last surgery in 4/2012 which sucked because I was still healing from the takedown! All I could say was bring it on! I really believe that we (crohn's and UC) have to adopt other alternatives because the meds. alone just do not help us out!
I hope you find some relief soon Vanessavy. You certainly have suffered long enough!
Roberta

7/30/139:12 AM

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CeeeeCeeeeMember

This suggestion won't cure anything, but for me it is almost instant relief from severe muscle cramping.....legs, feet, or hands. I even keep some in my car because those spasms sometimes start while I'm driving. I keep a large bottle of diet tonic water with quinine by my bed.....that is where I experience the worst cramping.....smaller bottle in my car. When the spasms start I take a few slugs of the tonic water. Within a few minutes, the cramping totally subsides. It doesn't matter if the tonic water loses its carbonation. Flat tonic water with quinine works just as well. It's worth a try! You can use the diet version or the regular.

7/30/1312:21 PM

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vanessavyMember

HA I wish Quinine worked. I tried that about 6 years ago and that never worked. Mine is more neurological it isn't related to hydration and electrolytes or missing potassium, etc. It is a big case they can't figure out.

Nothing is related to a drug. Been this way far before the drug was introduced. I am not on Tindamax for 2 weeks out of the month and when I go on it I sometimes have less appetite but this is very different appetite issues, nothing I have had before.

I don't have any auto-immune disorders, no UC or chron's etc. So I am considered healthy by all tests and by the book.

7/30/1312:31 PM

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