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Posted 12/29/2007 2:44 AM (GMT 0)
Has anyone else been diagnosed with fibro and if so what works for the pain? Gastro MD says it is crohn's arthritis but the arthritis MD says Fibro, several tests all negative so I dont know which way to go or what to do. I am starting physical therapy on Mon and take pain meds and muscle relaxers just to sleep. I need some kind of outlook on this as I have been dealing with this for over a year. Im also thinking about starting something like curves but I dont know if I will be able to follow through with the program because of the pain.  Thanks for any advise
Posted 12/29/2007 4:21 AM (GMT 0)
I also have fibro as well as cd. At the moment I take Soma for muscle pain, but I have heard that Lyrica has been cleared by the
FDA as the first real treatment for fibromyalgia. Taking exercise is a good idea, but make sure it's low impact. Swimming when
possible helps to relax tight muscles, especially if the water is nice and warm.
I find applying heat and gentle massage for those areas that are problematic right now.
I wish you lots of luck. Fibro can be a huge painful problem
Posted 12/29/2007 4:25 AM (GMT 0)

Hey there,

I have worked in the Fitness Field but by no means am I a professional physical therapist so this is just a bit of what I have learned.

Prior to increasing your physical activity level, it is a good idea to discuss your plans with your physician. Additionally, an ACE-certified Personal Trainer can assist you in developing your activity program and guide your rate of progression. One of the friendliest family oriented places to find a trainer is at your local YMCA.

Because postural imbalances and tight, inflexible muscles are common in individuals with Fibro, every activity session should begin and end with mobility (flexibility and range-of-motion) activities. These exercises should be done slowly, emphasizing quality of movement, and never be taken to the point of pain.

The trainer will help you set up a program and then you may work on your own.

Walking also is an excellent activity. You do not need a trainer and again your should stretch before and after, go at your own pace and rest when you need too.

I am sure you will get some great advice from other members.

Take care and I wish you the best.

Kitt

Posted 12/29/2007 6:06 AM (GMT 0)
crohnie - I am by no means questioning your "arthritis MD" or his/her ability to diagnose. If I were in your shoes, I would be getting a second opinion from a rheumatologist that specializes in or has expertise in the arthritic conditions that can effect people with Crohn's diesease. My GI and rheumy were on the same page and quickly identified my problem thereby preventing me from having unnecessary hip replacement surgery that had already been scheduled by a ortho doc. What medications are you on for your Crohn's? The biologics such as Remicade and Humira also work on some of the spondyloarthropathy diseases that can be common in those of us with CD.

I have been taking Tramadol for a couple years to help with the pain associated with the spondyloarthropathy associated with CD. I also take Neurontin for neuropathy and that also helps with the pain. I have Vicodin for breakthrough pain but try hard not to use that much. I do find if I keep moving that I suffer less from the stiffening. I hope that you can get some relief soon.
Posted 12/29/2007 11:59 AM (GMT 0)
Thanks for all the input. My GI and Rheumy MDs are working together but disagree as far as the fibro. GI says fibro is a cop out for MD's that dont know what is really wrong so that is why he believes it is my Crohn's. My Rheumy is the best in town and I have gone to the University to have a second opinion and was told that the Rheumy is doing a good job and that he is a good MD and that they cant find anything either. I have had every test possible to the point that there is no more testing to be done. I have taken both Remicade and Humira and had reactions to both so those are out for me. My mom is wanting to start Curves and wants me to go with her for support but I dont know if I will be able to do it because somedays it takes all I have to move. I also have an office job which does nothing for all my stiffness so by the end of the day I am not always in the best of shape and this is when I would have to go to exercise since I work full time.

Posted 12/29/2007 1:15 PM (GMT 0)
I have fibro with my Crohn's and my PCP put me on Lyrica. I really didn't want to take it at first because they told me that fatigue was one of the side effects and I was tired all the time anyway, but I finally did start taking it. After a couple weeks or even a couple months, I realized that I wasn't having the muscle pain I used to have. I also have arthritis, so it doesn't help with that, but when I've missed a dose or two of Lyrica, I've noticed the pain comes back with a vengeance. I've been on it for 7 or 8 months now and never experienced any side effects at all. NONE!! I'm happy with it for now.
Posted 12/29/2007 3:47 PM (GMT 0)
I was diagnosed with fibro 3 years before being diagnosed with Crohn's. After watching a few things that I was eating that were causing muscle spasms and making sure no matter what I get rest then my Fibro was under control. In 05 while I was pregnant and undiagnosed with Crohn's, I was having serious muscle spasms in my back that would literally bring me to my knees. Heat works the best for me in that aspect. I would die without my heating pad some days. I may be wrong about this (although I'm pretty sure I'm correct) but firbo affects your muscles where arthritis affects your joints. The pain is different. I am currently on remicade to maintain my Crohn's after a resection 5 months ago. I am starting to have joint pain on top of the muscle pain/spasms. You might want to consider asking for something to help you sleep. I know that for me the difference between a good day and a bad day sometimes is the result of how much sleep I got/or didn't get for that matter. Good luck - take care!
Posted 12/31/2007 6:18 PM (GMT 0)

Hi,  I have been diagnosed with light Crohn's disease (a cancker in my Ilieum) since Dec. 2004.  Being pregnant brought it out, but it took 2 years for them to decide what it was.  I was passed from my family doc to my OBGYN to a GI specialist.  I thought the burning in my stomach was a hunger pain.  I thought I was hungry all of the time.  I also have a light case of sleep apnea.  I was recently (just this year) diagnosed with fibromyalgia.  I am tired AALLLL of the time!  I take Vitamin D, Calcium, and Entocort for my Crohn's, Lyrica for my fibro, and my family doctor put me on Provigil because I am so tired.  I take that only as needed.  Provigil was designed for people with narcalepsy.  Please forgive me for my poor spelling.  I take it sparingly because it is expensive and I don't like taking any meds if I don't need them.  My GI's nurse is always saying stuff to me because I go off of my meds as soon as I hit a remission stage. 

My last family doctor told me I ought to see a Psychiotrist because I kept coming in with pains in my left side at the bottom of my rib cage.  My GI and my family Doc kept passing me back and forth saying it was the other's responsibility to find it.  Finally my family doc decided I ought to see a Psychiotrist, claiming that it is recomended to patients that have pains that doctors can not find the causes for.  I stopped ALL meds, and ignored the pain as much as I could.  I felt betrayed.  I assumed that since my family doc decided it was all in my head, like a hypocondriac, I had better start treating the pain as if it did not exist.  I lasted about 9 months or so.  I couldn't take it any more and called my GI.  His nurse scolded me for dropping my meds and going to extremes.  She said that it was not in my head, that I really do have Crohn's disease and the tests she has, proves that fact.  I quit seeing that family doc.  I started seeing walk-in docs instead.  This year I hurt my neck and back at work.  I did not want to be passed around again, so I asked my cousin, who is a registered nurse, who she recomended, since she worked for the medical system I am in.  She recomened Dr Gordon.  I am so thankful!  Dr.Gordon found the real problem with my work injury (unlike the doc I was supposed to be under, but he didn't bother to see me until the last day I dealt with the office he was in)and Dr. Gordon diagoned me with the fbro, and he put me on a C-pap (breathing machine for when I sleep)and the Provigal. 

Things are starting to get better.  I KNOW when I don't take my Lyrica!  My left rib pain is the first thing to show up when I forget to take my Lyrica.  It is sharp like someone has just poked me in the rib with a sharp fingernail.  (My cat finds it everytime he walks on me :) )  I was in a work hardening program (basically therapy to get me back to working condition after being off for so long with the injurys).  I must have forgotten to take my meds the last time I went, because my therapist lightly patted me on the back ( which was weird because he usually gives me a good pounding back thump to encourage me if I am doing well)and I jerked from the pain.  He was immediately sorry.  He went to touch my back again to say he didn't touch me that hard, but I flinched so bad that I almost fell off of the treadmill.  He was shocked that a light touch can hurt as bad as if he had actually slugged me.  That is how it felt too, like he had slugged me hard in the upper left back. I suggest checking with your doctors to decide if you have fibro or arthritis.  Lyrica has helped immensly for me.  I hope they find something for you soon! -  Teeny  

Posted 12/31/2007 6:32 PM (GMT 0)

Hello Teena,

Thanks for you input, great post and I am sorry you had a hard time getting your diagnosis and treatment plan corrected.

May I request that you break down your  next post into paragraphs as it makes it so much easier to read and comprehend.

I thank you in advance for your understanding of this request.

So Happy to have you with us.

Kitt


Posted 12/31/2007 6:36 PM (GMT 0)
I also have Fibro. i even questioned my Rheumy many times. I also have some Arthritis shown by xrays. So it is possible you have some other things going on as well as Fibro. I too am tired all the time. Sometimes it gets better for me. Also, my muscle relaxer stopped working and my Rheumy switched it for me. good Luck!
Posted 12/31/2007 7:22 PM (GMT 0)
I have had a lot of pain in my hands, wrists, elbows, and shoulders of late. I am thinking its from the Crohn's.
I slept in both days this weekend, felt refreshed, and decided to get some exercise. I walked on the treadmill for an hour Saturday and Sunday, with stretching before and after, and even a little weight work. My joints feel better than they have in a long time. I am going to try to get regular exercise and see if it helps. I'm hoping that this weekend's little experiment is indicative that it will. tongue

Sometimes, health facilties will let you try them out before you sign up. Invariably, I seem to always lose steam for going to the gym (and I think they are germ factories besides.) I end up doing things that are more easily sustainable like taking a walk, stretching, etc. It's hard enough to "get up" to exercising sometimes, let alone driving to the gym and all that. Start slow perhaps and just walk and do some light stretching maybe? I swear the walks over the weekend let me sweat out some toxins or something. I feel great today. (3.7 MPH for an hour each day had me sweating bullets.) tongue
Posted 1/1/2008 6:05 AM (GMT 0)
Hey, here's a new twist on the whole Crohn's and Fibermyalgia thing.  I'm a preschool teacher with Crohn's and my aide has fibermyalgia!  Now, that's something you don't hear about every day.  We love the job because it is so fun and difficult at the same time that we completely forget about our pain....well, most of the time!  We are just so busy!!!!

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