Is anyone like me?

[Ellaruby]

Hi Everyone,

I've been visiting this forum for a while and its been very helpful, but I'm stil to find someone I can fully relate to.

I'll try to keep it as short as possible!! 12 years ago I was 17 years old, suffering from severe fatigue, loss of appetite, weight loss, LRQ pain and intermittent diarrhea. I was at college, struggling to attend and keep up with my assignments mainly due to the fatigue. The May of that year (2000) after having only the general blood tests done (Lfts,U&E's,Fbc,CRP,ESR,Thyroid) I was diagnosed with ME/CFS.

By the end of 2000, I had such a debilitating level of fatigue, I was unable to go to college/work/exercise and was rarely well enough to see friends.

By May 2002 in addition to the other symptoms I was stil suffering from, now I had blood in my stools. My GP sent me to see a gastro consultant, he felt my stomch and told me I had IBS.

Naively, I continued suffering for another 6 more years, with all the above symptoms, the debliltating fatigue/malaise being the worst. As this is what stops me from being able to work/exercise/starting a family, having a life basically.

In 2008 I was now going up to 20 times a day, I ended up being admitted to hospital and thats were I was diagnosed with crohns disease. Since then its continued to be a bit of a nightmare with inadequate doctors and treatments.

Now, I have a good gastro consultant, I'm on 100mg azathioprine and I've just finished my infliximab loading doses (22 Dec), they're every 8 weeks from now on.

Sorry for such a long story, but I'm stil unable to work/exercise and what I want more than anything is to have the energy/health to be able to start a family, I'm 29 now. I was so hopeful infliximab was going to give me my energy/life back, it has really improved the pain and frequency but my energy levels are stil the same.

I do not suffer from lack of motivation or depression and I've had blood tests to check vit d, b12, iron etc and all are ok.

Is anyone like me?
Do I need to give infliximab more time?

Thanks for reading, you guys have helped me so much already.

 

[Jessi]

Hello Ellaruby, and welcome to the forum.

I have only heard one other person mention being diagnosed with ME. Before that, I had never heard of it. I'm glad they got your CD diagnosis right finally.

I'm on Remicade also. It took a bit of time for it to reach its full efficacy for me. But it did put me in remission after a few mos. I'm crossing my fingers that it'll work for you just as well. Check out our Remicade Sub-forum and chat with others on it.

Anyway, welcome again. I hope to see you around the forum. :hug:

 

[Spooky1]

Hi Ella,

yes, i have the crohnic fatigue symptoms. its fairly normal for us to have no energy at all. but thats the tragedy, not energy to even get out and enjoy life. this is one of the things that makes crohns sufferers feel so isolated. i can't manage a conversation without losing track. thats how bad it is. i find it so hard to reach up and get something out of a cupboard or at supermarket that i go nausic and faint. no energy also means no energy to talk either.

you have my sympathy and there's plenty on here like it. so big hugs of understanding

 

[Ellaruby]

Thank you both so much for replying, its the first time in 12 years that I don't feel so alone! I saw my consultant last thursday and he said the same as you Jessi, that it can take a few months to get the full effects from infliximab, do you think then I'll be able to work/exercise? Are you both able to do these?

 

[Spooky1]

hi Ella,

soz, but no. no work nor exercise although plenty do do both of these, i'm unable due to exhaustion, fatigue and puking badly on exertion though i did love sport. work, i'm pegged up with liquid feed 20 hours a day and spend a fair time on loo breaks, or sleeping during the day as to be honest, my nights are disrupted with bouts of D. my meds also have some horrible side effects

but good luck to you. i do wish you well with the infliximab

 

[Ellaruby]

Thanks Spooky, so sorry to hear your having such a rough time. Isnt there anything they can do for you? Have you tried infliximab or humira?

 

[xJillx]

Hi Ellaruby and welcome! It may take Infliximab a few more doses to full take effect. However, I don't know for sure if it will or will not help with your energy levels. Many struggle with fatigue. But I think the goal is to get the inflammation under control as much as possible; in my eyes, that has to help improve your energy levels, right?

I sure hope you start to feel well and have lots of energy soon!

 

[tlc-x]

I'm 16, I can relate to the struggling with college/work/social life etc. I have been told it is ME/CFS but we're not convinced. Told I have IBS too.. umm I don't think so!

I have similar symptoms. I'm not living my life, i'm just existing inside of my house. I'm still undiagnosed, but come on, most of my family have crohns or UC and we all have the same symptoms. No I don't have CFS, ME or IBS.

So up to that point, I do understand.. but past your diagnosis, I can't relate to.

Take care. You're not alone xxx

 

[Jessi]

Thank you both so much for replying, its the first time in 12 years that I don't feel so alone! I saw my consultant last thursday and he said the same as you Jessi, that it can take a few months to get the full effects from infliximab, do you think then I'll be able to work/exercise? Are you both able to do these?

The Remicade has given me much of my life back, but I'm still deficient in some vitamins.
My energy levels are somewhat lower than before UC, but I have the energy to do my household chores, go shopping, eat out with friends or family, and attend an occasional party.
I need a lot more breaks than I used to, and I end the day earlier than my kids do on most evenings.
I get a lot of walking in, but I haven't been able to run on the mountain trails the way I did a few years ago.
That is mostly due to having vertigo, though.
On some days, I have a lot more energy than other days.
I really believe that we all need to supplement with certain vitamins to be 100% again.
And our bodies will be good to us, if we are good to our bodies.
Good luck!

 

[Miss Underestimated]

Also, it takes time to come back from the malnutrition. It does a lot of damage. Load up on those vitamins!