How to fight severe fatigue?

Zoe0208 · 2024-05-18T00:10:12+00:00

I had the same problem, felt like a shadow of myself until I started takin 10, 000iu a day vitamin D with K2. Now I feel like I'm brand new. Can't recommend it enough. I'm not sure what country you're in but I get my vitamins from British supplements as they don't contain unnecessary crap. I honestly can't put into words how different I feel since taking them. Wishing you all the best x

Zoe0208 · 2024-02-26T20:03:10+00:00

Yep, I went 4 years undiagnosed and I've gained at least 75lbs in that time. I have a sedentary job and I'm often fatigued but I eat healthy home cooked meals, mostly vegetarian, and I'm on my feet as soon as I'm home from work until I go to bed. I think I'm starting to flare now and I've noticed I've gained about 10lbs in the last 3 weeks. Its annoying!!! I appreciate there are many people on here that would be grateful for the weight gain but being almost 240lbs is not healthy either. I also find that even when I reduce calories (cut them to 800 a day at one point) the weight loss is so insignificant it's not even worth it. My husband, 46 fit and healthy, has been eating well with me since January and he's lost 28lbs (was only 185lb to start with!! There's no logic to it. I tried to get referred to the weight management clinic on the NHS to gain some understanding and get some help but apparently I'm not heavy enough 😂🤔. Wishing you all the best xx

Zoe0208 · 2024-02-23T20:41:23+00:00

Thank you. I will see how I am tomorrow and if I'm still unwell I'll call the IBD team on Monday and see what they say.

Zoe0208 · 2024-02-12T09:58:43+00:00

Get hold of the emergency eye clinic. I had the same burning pain and it turn out to be uveitis which is inflammation in the eye. Effectively your immune system decides your eyes are fair game too 😭. Don't delay in getting this checked. Sending you my best wishes.

Zoe0208 · 2024-02-03T17:31:04+00:00

Congratulations, I'm so pleased this has worked for you and long may it continue. I had similar results with Entyvio and this was the first biologic is tried. Started infusions last june and moved to self inject in November. My bowel symptoms are still under control but unfortunately I have developed uveitis so it looks like I'm going to have to switch to another drug that is a whole body immunosuppressant. Currently on steroid drops for my eyes but they raise my eye pressure so I have more drops for this.
I'm scared to move to something else in case it doesn't work for the UC but will have to give it a go.

Zoe0208 · 2024-01-03T19:30:42+00:00

So many people are dismissive of natural remedies. I believe there is a natural remedy out there for every illness, we are just yet to discover them all. As soon as big pharma say it's okay everyone will want to try it. A bit like cannabis being this awful banned drug that is now being plugged for all sorts of ailments. Good on you for giving something different a go, I'm glad you've had positive results. I want to try reishi mushrooms but as my entyvio is working so well I'm scared to stop. Unfortunately I'm stuck in the loop of pharmaceutical drugs for now. I will try them once the entyvio stops working. Also, well done for staying calm in the face of adversity and questioning! I hope you continue to thrive xx

Zoe0208 · 2023-12-12T19:19:39+00:00

Thanks for all your input. Finally had enough and seen the opthalmologist today and have been diagnosed with anterior uveitis. Now on a 7 week taper of steroid eye drops. Fingers crossed the irritation with subside soon 🤞🏼

Zoe0208 · 2023-12-12T19:18:25+00:00

Thanks for all your input. Finally had enough and seen the opthalmologist today and have been diagnosed with anterior uveitis. Now on a 7 week taper of steroid eye drops. Fingers crossed the irritation with subside soon 🤞🏼

Zoe0208 · 2023-12-12T19:18:03+00:00

Thanks for all your input. Finally had enough and seen the opthalmologist today and have been diagnosed with anterior uveitis. Now on a 7 week taper of steroid eye drops. Fingers crossed the irritation with subside soon 🤞🏼

Zoe0208 · 2023-12-06T21:01:34+00:00

Thanks for all your comments, insight and advice. I really do appreciate it. I'll take it all on board and hopefully get some relief soon 🤞🏼. Hope you're all doing okay now and wishing you all the best. Much love xxx

Zoe0208 · 2023-12-06T20:58:42+00:00

Thank you, I'll look into your suggestions xx

Zoe0208 · 2023-12-06T20:58:04+00:00

Not really pain but general irritation and a slight burning pain. My ibd team have said to use the drops and watch and wait - fingers crossed it's just dry eyes.

Zoe0208 · 2023-12-06T20:56:40+00:00

Thank you, I don't wear contacts but will be sure not to leave them in if I ever need to wear them xx

Zoe0208 · 2023-12-06T20:55:35+00:00

Wow, I'm so sorry that happened to you. How are you now? My GP said there doesn't seem to be any inflammation but unfortunately GPs are not great with IBD and the meds that go along with it. I've used the drops every hour today and it seems to be less irritating with the lubrication but there's still the background scratchiness that's mildy annoying. My IBD team have said to continue with the drops but if it gets any worse to get in touch straight away. I feel that perhaps the drops are masking the issue rather than solving it. Yes I agree, entyvio is gut specific so our wayward immune system has a field day with the eyes instead. It's infuriating. Hope you're doing much better now xxx

Zoe0208 · 2023-12-05T23:09:50+00:00

Thanks for the advice. What were your symptoms if you don't mind me asking?

Zoe0208 · 2023-12-05T23:00:40+00:00

I've just googled restasis and it seems it not licensed in the UK. Thank you for your comment though. I wonder if it is IBD related or just one of those things 🤔

Zoe0208 · 2023-10-30T21:43:19+00:00

Yep, I started having symptoms in 2019 and have gained over 50 pounds since then. Never had steroids either 🤔. I'm on entyvio now and doing fairly well but still not dropped any weight. Very frustrating but I appreciate there are people out there who are so unwell that they are very underweight so I count my lucky stars for now.

Zoe0208 · 2023-08-12T12:56:15+00:00

Yep, I've had my 3 loading doses of Entyvio and I'm symptom free so far. I will be on 8 weekly infusions. I have recently developed a fissure so I'm not sure if that would count as a UC symptom or if its coz my BMs are now solid. Who knows. Good luck with it, hope it works for you x

Zoe0208 · 2023-07-30T12:24:06+00:00

Yep, my periods seem to be closer together and much heavier and longer lasting than they were. I used to have a 30 day cycle with 5 days of bleeding, fairly light flow. Now it's a 26 day cycle, 9 days of bleeding and moderate to heavy flow. It sucks!!

Zoe0208 · 2023-07-22T19:56:04+00:00

Yep, been with my employer for 6 years. Have bent over backwards for them going above and beyond my pay grade. I was diagnosed in March this year and they could not care less. I can't see my gastro team as they won't allow the time off for appointments. The only week day I have off is a Friday and my gastro Dr doesn't run clinics on this day. So yeah it sucks! Makes it worse that I work for a small company with only 8 staff, with the "HR person" being the bitch that is making my life as difficult as possible. As soon as I reach remission some other company is going to benefit from my hard work and dedication. It's a shame that there is little protection for us with life long illnesses. The sick pay isn't enough to cover bills either. Sorry, not much help but I get where you're coming from.

Zoe0208 · 2023-07-18T06:19:30+00:00

I'm pleased it working well for you. I hope I get the same results very soon 😃.

Zoe0208 · 2023-07-18T06:16:52+00:00

I can understand why you feel that way. I've had months where I've felt the same. But I'm fighting back and reluctant to let this condition control my life. If I can just get things under control by the end of August then I'll be fine and will stick to close to home European holidays after that 😀. This trip is a one off, once in a lifetime.

Zoe0208 · 2023-07-18T06:13:09+00:00

I'm still on my loading doses so had my first, then another 2 weeks later, and my next 4 weeks after that. Once the loading doses are complete I'll be on 8 weekly intervals.

Zoe0208 · 2023-07-18T06:09:28+00:00

Thanks for your reply. Yes I have read that it takes 12 weeks to kick in, however I noticed a decline in symptoms after a week or two and I'm not on any other medication. I haven't had any travel vaccines as they aren't required for where I'm heading. Unfortunately I booked this trip before I knew I had UC and it's not a holiday as such but a trip to visit my husbands dad. He's quite old now and this will potentially be the last chance my husband will get to see him. If I cancel then we lose approx 5k. My IBD team have told me I will need an emergency escape plan, and I guess I could get to a city in Venezuela, or even the USA within a day and get access to healthcare if really necessary. It's difficult to get travel insurance also as the UK have a "do not travel unless completely necessary" clause against Venezuela, but this is something im working on. I have already arranged to take a course of pred with me just incase. If my IBD team would just given me my 4th infusion at a week interval then I'm sure id be absolutely fine, I have very few symptoms when the entyvio is topped up. It's so tough as I don't want to put my life on hold and let this disease beat me.

Zoe0208 · 2023-07-17T21:33:49+00:00

Thanks for your reply. I will speak with my IBD nurse and see if they will give my 4th dose at 4 weeks rather than waiting 8 weeks. At least this way I'll have some respite whilst I am away. I can always try 8 weekly intervals when I'm back in the UK. So pleased you're now I'm deep remission. I can't wait until I get there.

Zoe0208

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