Confused! Can anyone help?

[ZeldaLH]

I have been suffering with pain and fatigue for a good while now and have recently left work. My GP is sending me to a specialist to confirm whether I have Fibro/ME. I struggle with the most basic of daily tasks and can only walk short distances before my legs go from underneath me. As I have not been fully diagnosed yet I don't know what to do for the best. Should I be resting, Should I be pushing through to do my daily duties. I am just so confused with all the conflicting information out there. Sorry if this post seems very negative I am usually a very motivated and positive person. Thank you in advance to anyone who is able to offer me any advice or reassurance

[Cape_Cod_Sharon]

Good morning Zelda,

My advice would be to not push yourself because your body is screaming at you to rest. Do your daily tasks/chores in little amounts, do not push yourself, my experience is that pushing through only makes it worse.

Also I would make a list of every pain, every sensation etc. to show the specialist when you go. And do not discount any of your pains, numbness/tingling etc.

I wish you the very best and I hope you will keep us updated on your progress, also I hope you feel better.

Sha

[ZeldaLH in reply to Cape_Cod_Sharon]

Thank you Sha

This is pretty much what my family have advised, maybe I should learn to listen to them haha! I am mostly at home these days but try and get out to the local cafe for a coffee so I don''t become isolated. I think I need to just be patient and as you said log my pain and activity for the specialist and go from there. Will definitely keep you posted on my progress.

All the best

Z

[DanielleGemma]

Hey Hun,

People will all have different ideas and thoughts on this. I try and I suppose push myself as I still work full time and try and have a life but everyone is right, you do need to listen to your body. There are times when I have to cancel plans etc because I just need to rest.

Make sure when you speak to specialists you tell them everything, this illness covers so much stuff that you might not think it is related but it probably is. There is so much 'fluff' around are illness as so much is not known about it. You will find that most people have a lot of pain and tiredness but where that is and what the pain is like is different from person to person - for example I posted earlier about how my pain was bad in my legs but only in my legs but in the last 30 mins I now have shooting pains in my hands and bum so things change so quickly!

You know your body and yourself best. You need to learn to listen to what it's telling you! It's super hard and takes a lot of practice but its the best way!

I hope that actually helped rather than just being a lot of rambling haha xxxx

[ZeldaLH in reply to DanielleGemma]

Hi Hun

No worries I totally get what you mean.

I have always pushed through and worked, but I was getting home and passing out from pain and fatigue so my family where not getting to see me. I have always been self employed or a temp, so I couldn't really take time off sick, so I gave up work to concentrate on hopefully getting better I now know there is no getting better just learning to manage the condition. My GP has said she wants to get my symptoms under control so that I can start looking for work, but I must admit this has made me want to run before I can walk. I need to learn patience haha.

Thanks for the advice hun xxx

[DanielleGemma in reply to ZeldaLH]

I think that's the problem, everyone takes about the pain but no one talks about the other side. The overwhelming sense of loss you feel over the things you can no longer do. I was exactly the same, I was always pushing myself and the limits and ignoring my body and then making myself even more ill. I kinda thought I have no idea what I've done to deserve this, I have no idea what I do that makes it worse so I might as well carry on how I was before. It takes a lot of time and patience but you do get rewards from it afterwards. I just wish more people understood what we were going through as it can be so lonely xxx

[ZeldaLH in reply to DanielleGemma]

Yes and as supportive as family are they get frustrated at not being able to help. I am glad I have found this community. Its easy to forget that everyone who is now managing their symptoms has been where I am and had to pace it right down and get to know their new boundaries. I used to run around at a hundred miles an hour and do a lot of brain work, now I am learning to slow down and use my creative side more, cooking making things etc. I miss days out with my family and hope to be able to do them again eventually, but at the moment 2 hrs out is the max and then after that my legs stop working and I need a nap.

One bonus is that my husband has agreed to take driving lessons so we can get out when I am unable to drive (about time too haha)

I hope working full time doesn't impact on you too much, but I understand how important it is for your emotional and mental well being.

Take care

Z

[DanielleGemma in reply to ZeldaLH]

I know it almost feels like giving up but have you applied for a Blue Badge? I was successful on my second application and it's made a lot of difference! Also on big days out, I will go in a wheelchair so I can still enjoy things and be involved! I miss cooking, I find that i get half way through and I am so tired and clumsy but luckily my OH has picked up a lot of the slack that I am now causing. I am really lucky to have him, think it's easy to forget that sometimes!

Work I think keeps me grounded, it distracts me a lot which is brilliant and everyone here is really understanding. I have a few days off here and there when i need to but i brought a house that was 5 minutes from work so I could try and be here xxx

[ZeldaLH in reply to DanielleGemma]

I am going to apply for a blue badge and I do most meals in the slow cooker. When I do eventually feel able to return to work I will look for something closer to home as my last job took to 40 mins to an hr each way.

My OH suggested a wheelchair for days out so at least I can still enjoy a full day out. It is a lot to get used to but if it gives me some quality of life back it will be worth it xxx

[DanielleGemma in reply to ZeldaLH]

Yeah its hard. I find people staring really hard to deal with.... I either get really upset or angry but now I'm trying to let it go. People only do it because they don't understand and I'm quite hun.

What did you do before? Xxxx

[ZeldaLH in reply to DanielleGemma]

Yes the staring I now I will have a problem with!

I had my own business in IT and then I worked as new business adviser for contractors. It was fast paced, stressful and underpaid but I really enjoyed it because I love dealing with people and helping them achieve their goals. Now I avoid people because I find interacting with people exhausting!

What do you do? xxx

[DanielleGemma in reply to ZeldaLH]

Wow what a coincidence! I work in the accounts department of a group of recruitment companies who specialism is IT and medical xxx

[ZeldaLH in reply to DanielleGemma]

Omg thats weird haha.

Do you suffer from brain fog and does it interfere with your job? xxx

[DanielleGemma in reply to ZeldaLH]

I sometimes start something and then I'm like hmmmmmm 🤔 in normal life I suffer with it but at work I don't really important things anyway; making tea sometimes I forget about it haha 😂😂 I probably have a couple of days off a quarter but work is really understanding. I find it actually really helps me, keeps me motivated, gives me a purpose xxxx

[ZeldaLH]

Thanks Soo

Its so much more helpful to hear advice from fellow sufferers rather than just reading advice sheets etc.

I love the sound of hydrotherapy, I can already imagine how helpful this is.

I am definitely going to follow everyone's advice

Take care

Z

[ZeldaLH]

There will always be times we see someone else, that make us feel 'what right do I have to feel sorry for myself' but everything is relative and we all have our own pain and only we can truly know that pain.

We all need to allow ourselves time to feel sorrow for the loss of our life without pain to process and move on.

Be inspired by the little girl, not shamed.

Never be afraid to hurt and cry. The important thing is to smile and carry on.

(sometimes I need to practice what I preach haha)

Take care

Z

[ZeldaLH]

Yes so true. I read an article that says you go through grieving process for the person you were before. I am definitely going through that at the moment. I think I am at the denial stage xx

[Hidden]

Hiya have they tested your blood? Sounds like low iron plus I have same problem as you I do swimming on my good days to improve my strength but you need some pain meds and maybe iron tablets.

[ZeldaLH]

I know what you mean. I already know I am allergic to dairy, but need to rule out other offending ingredients!

[Stutteringstan in reply to ZeldaLH]

Did you see the last episode of Doctor in the House with Dr. CHattergee, a GP, it focused on a woman with fibromyalgia and he got her a SIBO test (small intestine bacterial overgrowth). She was positive, had diet changes which included dairy, and she improved a lot. Might be worth mentioning this when you see consultant, as SIBO can cause widespread, unexplained pain. I have just seen a gastroenterologist in Kent, and am awaiting the test to be posted to me from Guys. It is a breath test which you do at home, send back, and they give your GP the results. I will then be seeing a dietician. They are regulated, whereas nutritionists are not, for diet advice. Good luck on your journey, small steps.

[ZeldaLH in reply to Stutteringstan]

Thank you I will definitely look into this as i have suffered from food intolerances for years.

Good luck with your breath test !

[ZeldaLH]

Hi they have run my bloods and they are coming back ok apart from my ESR. At the moment I am on Naproxen and Pregabalin. I also have early onset arthritis and sacroilliac dysfunction which could explain the high ESR. Hopefully I will learn more once I have seen the specialist.

[ZeldaLH]

Aww that's terrible poor thing! Luckily there are alternatives now but again have to be careful what else is in them. I love the coconut based cheese

[ZeldaLH]

Its awful, the ongoing decline of the NHS. Glad he is ok now xx