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Anyone here with Fibromyalgia or Crohn's Arthritis?

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Posted 10/21/2008 8:55 PM (GMT 0)
Hello everyone!  I'm sure there is someone here with Fibro, and Crohn's Arthritis, but I can't remember who.  In previous posts, I have mentioned having terrible body aches and pains, my back and legs are killing me, headaches, fatigue and flu-like symptoms.  I am also very weak.  I haven't felt this sick in a long time, and am missing a lot of work.  Every day I feel worse. sad

Anyway, most of my tests are coming back normal.  Normal ANA, and I am not developing Remicade antibodies.  My GI is going to increase my Remicade dosage to see if this helps. We had decreased it thinking I was developing antibodies. He is also ordering a Rheumatoid Factor and a Sed Rate.  My last Sed Rate was 36.

My GI wants me to see a Rheumatologist, which has been recommended to me here at HW.  I can't get in for 2 months.  There is a long waiting list.  My GI seems to think I might have developed Fibro or some type of arthritis.

I feel so sick, and feel silly when my doctor says my tests are coming back fine....... eyes

Anyone here in the same boat?  If so, how do you cope?  I am exhausted...... I'm getting my Remicade tomorrow.

Blessings, Julie

Posted 10/21/2008 11:01 PM (GMT 0)
I have fibro and various other types of arthritis.

Here are a few things you might like to try, just to see if they help your quality of life between now and your rheumie's appointment:
* do everything you can to improve the quantity and quality of your sleep - comfortable bed, darkness, no tv before sleep, relaxation, whatever.
* try meditation / relaxation
* try doing some aerobic exercise each day
* try doing some stretching each day
* I find swimming really helpful (on the odd occason that I have the mobility to get there and the energy to do it *sigh*)
* try pacing, taking regular rest periods through the day, and try to work out what your energy envelope is. You can google to find more information on these things.
* try, try, try, to spend some time with people and try to keep doing things you enjoy. Depression and fibro tend to go hand-in-hand, and it's important to maintain your mental health.

I'm sorry you're feeling so horrible, and sorry you have to wait so long to see a doctor,

Ivy.
Posted 10/21/2008 11:29 PM (GMT 0)
Ivy, thank you so much for the wonderful suggestions! I knew someone here suffered from Fibro/arthritis. I hope I don't have these, but want to be as pro-active as possible. I'm so sorry you have to deal with those DD in addition to Crohn's. Blessings, Julie
Posted 10/21/2008 11:55 PM (GMT 0)
Julie - no worries. Don't be sorry for me; I'm lucky in that my fibro (currently) isn't as severe as it might be. My biggest problems are insomnia and fatigue. I hope yours will be a mild case too, and that the rheumie will be able to give you some better quality sleep & life.

I.
Posted 10/22/2008 2:29 AM (GMT 0)
Fibromite and Crohnnie here. Ivy has some good sound advice! The fatigue is the most frustrating for me. My window of opportunity to get anything done is about 4 hours after waking in the morning and 4 hours after my afternoon nap. Not much, but I'll take it. Stay as mobile as possible!!!! I have a fantastic dog that kicks my butt out of bed every morning when I feel I've been run over by a Mack Truck. I take my pain meds and hit the shower for the heat. After the heat has loosened up my creaky joints and the pain reliever has kicked in (an hour later) then I am ready for my stretches. Then and only then can I actually make it in to my office for about 4 hours. I listen to my body and when it says cries enough already, I listen and take my afternoon nap (no more than 45min) or I won't sleep that night. This grants me another 4 hours to cook dinner, finish up whatever paperwork, hit the heated shower or heating pad again and finish up my day. Taking walk each day is a huge plus too. I'm like Ivy and have a mild case. I have had a shoulder fusion already and a course of PT to fix that but it can ALWAYS be worse. I suspect it was the high doses of prednisone I had to take over a prolonged period. I don't know of any medical documentation of this but I do know that prolonged steriods breaks down muscle tissue long term. Not a good thing. I also have narrowing of the joints in my hands and big toe. OUCH! I have been tested for RA & other CD related arthritis but nothing related has showed up. Hope I've given you something you can chew on and hang in there for the Rheumy appointment....you are gonna LOVE him! Above all don't let anyone tell you the Fibro is all in your head...Your body knows better and so will your Rheumy. When you are tired....learn to say "NO" and keep on smiling cause we are here for you!
Posted 10/22/2008 9:47 AM (GMT 0)
Broomhilda, thank you so much!!:) Blessings, Julie
Posted 10/22/2008 12:00 PM (GMT 0)
Hi there
I too have Fibro and I believe Ivy as well as others
'Has given you some great input as to try to help til you see
Rheumy

THere are days I feel Like I have been run over by mack truck
I did see thr rheumy on Thursday and he tried to get liquid out of a hard swollen foot to no avail
BUT I am here to say I know have 24 lil PG sopres from the whole thing..............

I wish you all the best

LYN

So many great ppl here to talk to and there is a fibro forum as well
LYMN
Posted 10/22/2008 12:09 PM (GMT 0)
HI there,
I too have fibromyalgia, and the pain that i felt last night was excruciating.
It felt las though somebody opened my mouth, and poured a great big jug of scalding hot water down my throat into my body,
Everything was hurting, and on fire, felt inflamed, also had stabbing pains everywhere on top of that, i was not in good shape.
I hope that you are feeling better.....
take care
kelly
Posted 10/22/2008 1:48 PM (GMT 0)
I have Fibro and Osteoarthritis myself. I can tell the difference between the two. My fibro (like today) is a burning type of pain. The osteo is more of an aching type of pain. My Crohns right now seems to be pretty much under control, but I really suffer alot with the body pain. My Rheumy wants me on Humira or something like that, but I am just not ready to go on the stronger drugs. Plus I have seen so many people that it didn't ease any of their joint pain. I am really suffering alot with pain in my feet. It feels like I am walking on the bones on the bottom of my feet. Owwwww!!! I just try to keep moving everything as much as I can. I take my pain meds and hot showers to help out.

Hugs,
Gail *Nanners*
Posted 10/22/2008 4:49 PM (GMT 0)
I have Fibro, Osteo, several bulging discs, stenosis, Crohn's, blah, blah, blah.

The very best thing I can advise you to do is this; never, ever let this take you down and keep you there. You can handle this. Sometimes it seems like you cannot take one more day, but, you do! It is my faith in the Lord God that gets me through. I almost never miss church. I work every day at our shop. But, if I am really bad I can go home. That is a huge bonus point.

I have just come off a 5 week flare from hell. I had 2-3 weeks of very little pain, and now it's coming back with the weather. I have to get 2 resections done on nov 4th, and I am a bit nervous about the fibro. It is a terrible thing, and I have a bad case of fibro, but you can still remain active. Just not as active as you used to be. An important factor to never forget is that you must accept this and still live! Just don't forget to breathe!
Posted 10/22/2008 5:44 PM (GMT 0)
My rheumatologist suspects I have fibromyalgia... but I still need to get more tests done... *It's such a pain setting up doctor appointments...* At any rate... joint pain sucks...

My hips and knees have been especially bothersome lately... I'm not doing a very good job of handling things right now... Keep wanting to stay in bed all day and all night...

So, it'd probably be good for me to follow the advice the others have given, too...
Posted 10/22/2008 11:19 PM (GMT 0)
Another helpful strategy can be to stop what you're doing the very second you start feeling pain. Avoid repetitive activities, and change your activities frequently. For instance, don't peel all the carrots at once: peel one, then chop it, then wash another one, then peel it, then chop it, etc. In the garden, prune for a few minutes, then weed for a few minutes. In the house, vacuum for a few minutes, then clean a window. If you start to feel tired, stop immediately and sit / lie down for a few minutes and rest. It's better to lose a few minutes, than to lose an entire day or week to exhaustion.

Your family and friends may criticise you for "fiddling" or "not finishing what you start". Ignore them. This is a recognised coping strategy that may increase your productivity. You may never be as productive as you were in your pre-fibro days, but we need to adapt and change our routines and attitudes to fit our physical limitations.

Best wishes,

I.
Posted 10/22/2008 11:59 PM (GMT 0)
Thanks to all of you for the replies. I appreciate it so much. I went and saw my GI again today after my Remicade treatment. Most of my tests still look good, except I'm anemic. He does feel I do have Fibro, but would like the Rheumatologist to confirm the diagnosis. Blessings, Julie
Posted 10/27/2008 1:37 AM (GMT 0)
Hello. I have Crohns, diabetes, osteo.  Although, I don't take anything for the Crohn's( I have to deal with the constipation, bloating and pain) which in itself makes me feel like an oddball.  I also deal with the pain of osteo and the joint pain from the Crohns. For the extreme fatigue and weakness, I take B-12 shots. Is there anyone who suffers from the other parts of Crohn's
Posted 10/27/2008 3:42 AM (GMT 0)
Beat up from the street up has serious meaning to us on this string. My family thought I was crazy when I told them it hurt from the roots of my hair to my toe nails. Guess you have to have been there to get it. I still don't think they beleve. I hope they never really understand what that means, l pray every day they never get it. I hope I never have it as bad as in '02 again, but the last several weeks I've gotten it. I can tell I am not absorbing B vits right now too. A Company Doctor gave me a B-12 shot when I ran our exibit at their Health Fair, and the fatigue was so much better. Now if I miss a day of my Co-Enzymed B complex, I can't function. The pain has not gotten to bad yet, guess I better get my diet right, and hope I start absorbing well again. Sometimes I really wish I could take some pain pills. Sorry for the moanin'. Wish I could be of some help. All the right suggestions are here. I will follow those,  I know they are the things that work for me too. I can only back up what they say. Lots of rest(easier said than done) , and if I rest more than 6 hours, I have to move around for a few hours,then rest again, or I get too stiff 

to get back up.

Posted 10/27/2008 4:00 AM (GMT 0)
Hi Julie!
My son was on Remicade for 1 1/2 years. At a point his dosage was doubled which helped for a while. IN April his GI decided to change him from Imuran to Methotrexate and during that switch over he probably started to develop antibodies but they did not show up in his bloodwork for some time after. It was around the time of the switch to Methotrexate that he began developing joint pain that began in his hands and toes and then began to travel to larger joints. His pain always improved after Remicade but would reappear prior to the next infusion and this would happen earlier and earlier each time. I noticed that you stopped Imuran in September and I was wondering if you were on anything with the Remicade to prevent antibody buildup. As soon as my son went off the Remicade his joint pain got less and less until it completley disappeared. He is now on Humira doing much better. Just wanted to let you in on his story so that maybe that could help guide you. Good luck!
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