Brand new member in full fibro and M.E. flare up

[Chocolatespice]

Hi everyone. I am a mum of 2 with a very supportive husband. I have been poorly for a very long time. I have Crohns disease and have had 10 operations with over 90% of my bowel being removed. I have Addisons disease and I have fibro and M.E.

I am currently in a fibro flare up that has been going over a year now. I am 😩 exhausted! I'm am permanently in pain and I am fed up. I don't sleep. I am up all night and spend most days back in bed. I am missing out on my children growing up and missing out on being a wife to my husband.

Is there anyone going through anything similar who may have some words of wisdom for me?xx

[Yassytina FMA UK Volunteer]

Hello and Welcome, I feel for you so much as having all these conditions are very wearing and so sorry the flare is lasting so long 🙁.I am glad your husband is supportive, i am hoping some of our members will pop on too chat as I read some mums like you struggling the same way .xxx

[Chocolatespice in reply to Yassytina]

Hi Yassytina. Thank you for your welcome and replying to me. It makes me feel like I'm not the only one out there! I hope others come to chat as well as I would really love to know how others cope. I hope you are well and I'll keep my fingers crossed that we are all able to help each other. Take care xx

[klr31]

Has your doctor suggested anything to help with the pain? I have M.E and take a small dose (10mg) of amitriptyline in the evening which helps with pain and sleep. I think sleeping well is so important.

Karen

[Chocolatespice in reply to klr31]

Hi Karen. You wouldn't believe how many meds I'm on. I rattle I take so much!! Because I have so many other health problems I have to take a lot of medication, which includes high dose strong opiods. I have been on them for years and am currently in the process of reducing them all. They don't help. I used to take amitriptiline and diazepam. I came off them due to side effects. I couldn't cope with the dry mouth. Also, I have had over 90% of my bowel removed so I have to take very high doses of everything due to my lack of absorption.

I'm a mess basically!! I haven't had a full night's sleep in over 20 years. Sleeping tablets will make me fall asleep but they don't keep me asleep so I am awake within an hour or so. I never have more than 2.5 hours in one go. It is truly exhausting 😪 You are so right that a good sleep would help but my doctors are at a bit of a loss as to what to do.

Sorry about the mammoth reply! Have you had any success with anything else? Meditation? Sleep therapy or whatever? xx

[klr31 in reply to Chocolatespice]

Can you take any pain medication by a skin patch so you can avoid absorption issues? Just an idea.

I find the Amitriptyline very helpful but am glad that I didn't have to increase them as they can cause nasty side-effects. Sometimes, taking a lot of medication can cause as many problems can't it.

I hope you can find an answer. Do you think you relax fully? Just wondering if something like acupuncture, Reiki or meditation might help you?

Karen

[Chocolatespice in reply to klr31]

I used to use Durogesic patches. Again I still needed higher doses. The problem with the patches is they don't always stick properly and you still need a morphine or oxy base for breakthrough pain, which ends up being high because its oral and we are back to absorption issues. I feel like I go in circles. You name it and I've tried it.

I am a reiki master. I qualified in 2005. I have always been interested in alternative therapies and healing, including the healing of others. Since my latest flare up though, I canr practice my reiki on anyone else as I don't have the energy. I still do it on myself and it is very relaxing. Unfortunately, it doesn't send me to sleep though. If I do reiki on my husband he is snoring like a trooper in seconds!!😂

[klr31 in reply to Chocolatespice]

Yes, I'm the same, when I send Reiki to people it helps them relax and sleep often. I hope you can find something which helps you. 🙏

[Chocolatespice in reply to klr31]

Thank you so much Karen. It has been really lovely chatting with you. I don't know if you know other mums out there who are in a similar position? I think I'm just looking for some guidance and suggestions just like you've given me tonight. How wonderful that you do reiki as well! Maybe you should send some to me and try and unblock me that way 😄 Take care and I hope we chat again xx

[klr31 in reply to Chocolatespice]

I could send you Reiki sometime if you'd like me to and can let me know a suitable time..This site is great for advice. The M.E site too, or have you tried Facebook M.E groups?

I'm awake unusually early this morning 🤷‍♀️!

Karen

[Chocolatespice in reply to klr31]

I would love you to send me some reiki! Thank you so much for offering. Any time between 10 and 3 is usually good for me. But only if you have time. Don't go out of your way for me. I'm sure you have little precious time for yourself so whenever you can is fine. Thank you so much.

I haven't tried any other sites. I'm shocked to say but it has taken me 22 years to try a support group at all! My family always advised it but I never really wanted to. I think now I have changed my mind and dipped a toe in I am beginning to see the positive in being part of a community. Also, I am probably the only person on the planet left that isn't on Facebook! 😆 So no, not tried anything there either. I'll check out the other sites and maybe give them a go though so thanks.

Take care.

Emma

[klr31 in reply to Chocolatespice]

OK, will do.

Karen 🙋🏻‍♀️

[orange2323 in reply to Chocolatespice]

Hi Chocolatespice,have you tried an anti histamine to help you sleep? They seem to work a treat for myself. My wife and daughters find it hilarious how it's the only thing that can knock me out. I feel really chilled the next day too. Could be worth a go. Good luck and let us know if you try them.

[Chocolatespice in reply to orange2323]

Hi. Thanks so much for the suggestion. I take 4 antihistamines a day (chlorphenamine) and unfortunately no, they have no sleepy effects for me at all. They do help with my itching though. My husband is exactly like you! Snoring within minutes of taking one!! I am jealous of you both 😆

[Vonnie10]

Firstly you need quality sleep try do some breathing exercises on you tube I don't have fibro I have RD equally as painful but worst if o don't gave quality sleep your all back to front .

[Chocolatespice in reply to Vonnie10]

Thanks Vonnie10. I will have a look for some and give it a try. I'm willing to give pretty much anything a go at the moment. Thanks for the tip.

[Dash01]

Hello

I am fairly new to this group and find it so helpful to be relatable to other people. I am so sorry you are suffering. Keep taking all the small wins. Remember your family love you. Your kids will love you no matter what. Don’t feel to guilty about yourself. Be great full although your not feeling great your here to see your family. Be kind to yourself 🩷

[Chocolatespice in reply to Dash01]

Hi Dash. Wise words. We sometimes forget to recognise the little wins don't we? You are so right. And I know my family love me no matter what. It is hard to remove all the guilt and feeling of letting them down though when it has gone on for so long. My kids have never had a "normal" mum. They've had ambulance crews in the middle of the nights, hospital visits, birthdays celebrated in hospital beds and so on. I would love more than anything to be able to give them a normal mum. But as my youngest daughter said to me once... "but we got a special Mummy and thats way better ". Oh I cried!! Things like that keep you going.

I really hope you keep well and take on board the little wins ad well. Thank you so much for getting in touch with me. It means a lot getting support. Take care xx

[Dash01 in reply to Chocolatespice]

Hey

I am my own worse enemy I tell you to take the small wins and I’m terrible at doing that myself so thank you for telling me also.

What is “normal” anyways? “Normal” is what we need it to be and your life is your normal so don’t be shameful of it. Xx