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SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/6/2007 7:53 PM (GMT -7)   
I have posted on the Crohns forum but now have issues with my AS, I know there have been a few threads on AS but my mind has been too foggy to take in too much information!
I have been off work this week with these symptoms - major lethargy - I could fall asleep right now! heavy limbs, foggy brain, nausea, joint pain and of course my spine hurts. Usually when the AS acts up I have none of the above symptoms, it usually affects my lower back and left hip.
Has anyone had these symptoms as a flare of the AS?
I take 25mg MTX and usually 10mg of pred but had to up that to 15mg due to the DD which has since calmed down.
I never know which causes the extra symptoms the CD or AS.
 
Im not very good at expressing myself so I hope this makes sense especially since my brain is so foggy, when I read on here how well informed everyone is about their illness I feel quite stupid as I only feel the need to inform myself when I have something go wrong.
Look forward to any replies
 
Jo
 
 

linlou
Regular Member


Date Joined Mar 2004
Total Posts : 302
   Posted 3/8/2007 6:32 AM (GMT -7)   

Hello Sydney Jo!

Okay. If I remember all my initials correctly, you have Crohn's and Arthritis. Me, too. But I've added Fibromyalgia (FM) to my collection. Talk about total confusion for me and my doctors! I have every one of your symptoms except the nausea. Although I do have days where my stomach isn't quite right. As to which one of my 3 disorders/diseases is to blame for it, no one knows for sure. Lethargy: I have times where I absolutely have to lay back in my recliner to nap because I feel like I've been drugged and can't stay awake another minute. Heavy Limbs: One day I'm okay and the next I feel like I have 20# weights attached to each of my legs and arms. Simply walking seems harder to do! Foggy Brain: One day I can remember the name I used to tease my sister with when she was 3 and other times I can't remember how to spell THE. I refer to these times as "My brain's on Vacation!" It's very frustrating, isn't it? Joint Pain: I might be able to describe it better if it stayed in only one joint but from day to day it changes places. It can even change throughout a single day! And the Spine Pain has got to be the worst. Mine actually feels like it's burning. Everything I do involves my back in some way so moving any which way can be painful. I have found some relief for that though. I use a large ice pack on my back for about 20 minutes, followed by a long heating pad for about 20-30 minutes. I was amazed that it really helps! Even the next day I sometimes ache less. Gee, large ice pack, long heating pad. I sound like a real picture of health, don't I? LOL  yeah

We suspect the Fibromyalgia is to blame for the lethargy, heavy limbs and foggy brain. We suspect the Arthritis is to blame for the joint pain and spine pain. I also have it in my hands real bad but I find typing helps, along with compression gloves while I sleep. And what can we blame Crohn's for, you might ask. Well, it could be the reason I have Arthritis. It can also be blamed for some of the lethargy, especially if I'm even mildly flaring up. Right now my Crohn's is in remission but even then, it's still in me and never completely silent.

So is it possible you have Fibromyalgia? Could be. Or it could be just from the combination of Crohn's and Arthritis. I'm sorry I can't be more help to you but I was diagnosed with Arthritis shortly after I was diagnosed with FM. I've kind of given up on figuring out what to blame for what symptom. The doctors can't do it so how am I suppose to. I'm sure you are just as confused as I am. You're probably wishing it would all just go away! Me, too.

If I can help in any way, please let me know. If you post on this thread that you started, I'll know it and get back to you. You have one thing I don't. A job to go to each morning and that makes all of your symptoms very hard to cope with. I had to stop working because doctors were so limited on what they could do to help me that I couldn't function at a job. I hope someone answers your post that can give you more detailed help. I just wanted you to know that you're not alone. It's not all in your head, like some doctors (and people) try to make you believe. You just keep looking for some answers because doctors don't always have them.


~~IF WE CAN'T LAUGH, WE CAN'T SURVIVE~~


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/8/2007 7:54 PM (GMT -7)   

Linlou,

Thank you so much for your reply. My GI mentioned Fibromyalgia as she was writing my doctors certificate out for my week off work, she also mentioned having irritable bowel on top of my CD so I was not really having any faith in her that day. eyes She is a nice lady but she doesnt really understand having flare ups as she keeps telling me "but you are still on the same dosage of your meds, why would you be in a flare" good question lady, and "why are all flares different", if I knew that I would nt be asking you! I only visit her when I need referrals to specialists, medication scripts and time of work.   We sound like kindred spirits health wise, Im glad you came along and posted, I felt like I was reading my own life story. How do you deal with all these symptoms, especailly when they all happen together? Do you up your meds? Im worried how long it will take for me to snap out of this one, I have upped my meds to 20mg pred and 25mg MTX and am waiting for the pred to kick in (its been 2 days) which it hasnt yet because Ive not long woken up after falling asleep on the sofa!

I have to go back to work on Monday (I only work 40hrs a fortnight) and I dont think I physically can. Hopefully the pred kicks in over the weekend.
Sorry about the long post, Im sure I have more to say and ask of you but Ive exhausted this post
 
Thanks again Linlou
 
take care
 
Jo

linlou
Regular Member


Date Joined Mar 2004
Total Posts : 302
   Posted 3/8/2007 10:00 PM (GMT -7)   
Hi Jo,
 
Prednisone. Now there's some nasty stuff, right? The side effects are ever so delightful. Some of your symptoms might have to do with the steroid. When my Crohn's flares I start at 40mg. Through the years we've learned that anything less is a waste of time. At that dose things improve, my energy is through the roof and nothing on my body aches. It has it's good side! But coming down off the dose is tough. The lower I go the more the aches creap back in and I get very tired. There have been times when the reduction made me hurt so bad we had to up the dose and slow the reduction even more. Crohn's isn't fun and it's not for the weak. I went through 5 years of one flare after the other. For me, I gain weight on the stuff. Bloat up like a balloon! But out of everything I've tried, Prednisone is still old faithful. Always brings things under control, so far that is.
 
When you bring Prednisone into the equation, some of your symptoms fit right in with the reduction of a higher dose. Is that the case with you? I see you're at 20mg now. Where did you start out?
 
A good GI is of the utmost importance with Crohn's. It took me a while but I finally found one that I consider a "saint". From the first time I walked into his office, many years ago, I felt a weight being lifted off my shoulders. My previous GI was stuck in a rut. Same treatment over and over and over. Never varying, never trying different meds or doses. I had finally reached my limit of pain and frustration. Not only did he find a way to get me through my flare ups, but he made me feel like I wasn't alone. You know how some doctors give you the impression that you're wasting their time. That what you have is so ordinary that you have no right to complain? When I walk into my GI's office he actually calms me and makes me feel like I'm his only patient. It's a rare feeling for me. So if you have no confidence in your present GI, start asking around about others. A good "bedside manner" is just as important to our well being as the ability to treat our disease with knowledge.
 
Our foggy memory can come from many sources. It can be an aspect of Crohn's as well as Fibromyalgia. I believe that part of it comes from our minds being so focused on what's happening to our bodies. Our aches and pains are constantly in our thoughts and I think that makes it hard for our minds to focus on any one thing the way we should. I'm always trying to snap myself back to what I'm doing instead of thinking of so many things at once. I spend more time scolding myself than patting myself on the back for surviving it all.
 
Ask me as much as you like. I strongly believe that what we learn from others can benefit us greatly. Even something as simple as venting our frustration can give us relief. Knowing there's others that feel just like we do. Stress does awful things to us physically. And talking to others can relieve some of that stress. I hope you'll be feeling a bit better soon. It's no fun trying to get through a day when all you can think about is a warm bed and a soft pillow.
~~IF WE CAN'T LAUGH, WE CAN'T SURVIVE~~


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/10/2007 5:16 AM (GMT -7)   

Hi Linlou,

I have the same love/ hate relationship with pred as well. For a year, after a flare that put me in hospital, I managed on 5mg - those were the days, I currently take 10mg, which by the looks of it isnt going to be enough. After having upped the pred to 20mg with no success, have now upped to 40mg today with minor success - the D has stopped, but the brain is still foggy and I feel like an invisible elephant is sitting on me. Hopefully tomorrow this too will subside. Usually on 20mg I have cleaned the whole house and started on the garden -  not this time.

You are right about the GI problem, but in my area she is the best I could find, if I really am confused by her I will call my Gastro for confirmation of diagnosis/medication and she puts me on the right path - generally.

Thank you for all you wise advice, it does feel good to talk to people who know firsthand what you are going through.

Take care

Jo

 

 

 

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