Struggling with new diagnosis of fibromyalga

[Millyann64]

After so much suffering this is what they say I have help !!!!

[angiesmith50]

Morning Millyann64

Welcome to a lovely family.

Sorry you have fibro.

You will find us happy to answer any questions you may have or we will support you if you want to come and have a rant.

Has the docs given you any pain meds?

Fibro sufferers are normally low on vitamin B12 and magnessium. I find that they help with brain fog.

I would recommend you read as much as you can about the illness.

I wish you well and come and chat when you feel like it.

Someone from admin will be along to give you more info.

Take care

Angie xx

[Millyann64 in reply to angiesmith50]

Hi angie I been told I'm on right meds I'm on pregablin amatrypline but not helping thank you for replying I don't know how to help myself any tips would be great xx

[angiesmith50 in reply to Millyann64]

Hi Millyann64 I take pregablin and co drydamol for pain. Morpine if it's too bad.

I also take celecoxib for inflammation and Amitriptlyne at night to help me sleep. Also Diazepam when needed.

You need to give yourself time to accept that your life will change as you deal with the pain and fatique.

Unfortunately there is no magic pill and I have no one answer. I use a lot of heat which helps.

You get your good days and bad days but you have to pace yourself as not to cause a flare. I've just spent a week in bed due to a flare in fatique, pain and brain fog.

Members will tell you what works for them and it's trial and error as you try these different things.

A lot of us have other complaints too which does not help.

Diet does help lots of leafy greens. Organic food when you can. Low carbs. No tomatoes or green peppers. No alcohol. No sugar but as I say somethings work for some but not others.

I would ask your doc to see what vitamins if any you are difficient in.

Weekend can be at bit slow as people have families to see but I'm sure you will get plenty of info if you bare with us.

Take care

Angie xx

[Millyann64 in reply to angiesmith50]

Thank you angie x

[angiesmith50 in reply to angiesmith50]

Also Tumeric and cumin are good for inflammation too xx

[BonnieSue in reply to Millyann64]

Listen to your body. Avoid any movements that cause you pain. Repetitive movements will usually mean pain after a short while. Often you can avoid pain by switching hands and arms as you tire your hands or arms. Getting good at using both hands and arms so you can continue what you're doing is very helpful when you have fibromyalgia. Being ambidextrous through practice is great!

Getting a massage at regular intervals helps relieve the pain. A deep neuromuscular massage is recommended by ME! We tend to get knots of muscle or also they are called trigger points. Relaxation massage is cheaper but won't take care of these trigger points and the deeper muscles. You need the deep neuromuscular massage.

Applying heat to aching areas of your back, shoulders and neck provides some relief. A good heating pad is very helpful. The more stress in your life, the more pain you will have. Try to not worry about things you can't change. Practice being calm and peaceful through meditation and/or prayer or listening to meditation tapes or music, and generally keeping yourself as stress-free as reasonably possible to avoid pain. These are just a few tips that may help you. Welcome to our little part of the world!

[Millyann64 in reply to BonnieSue]

Thank you sue for advise and thank you for the welcome it's getting those closest to me to understand too I feel like I'm moaning and spoiling things but I just can't put up with pain x

[BonnieSue in reply to Millyann64]

I know exactly what you mean. They can't understand what they haven't experienced. But you can act in a manner that you expect to be taken seriously because the pain is very real. People pick up on your attitude and should respect you for that. Do you have a rheumatologist or pain management doctor to help you manage the pain? Sometimes even these doctors fail you and your GP is the one who's the best help.

[Millyann64 in reply to BonnieSue]

No I don't have rheumatologist but been to pain clinic with back my gp said what do you want me to do your on right meds x

[BonnieSue in reply to Millyann64]

ARE they the right meds or are you still having too much pain? And did your Dr. ask the right questions like I just did?

[Millyann64 in reply to BonnieSue]

No not really I get impression they just don't know what to do with me I keep seeing different gp as mine is always fully booked x

[BonnieSue in reply to Millyann64]

What about asking the pain management Dr. for the correct meds that other people say work for them? You could look over the things they write that work for them.

[BonnieSue in reply to BonnieSue]

If you want to see your GP, you could book him now for the future way ahead of now. That's if he's really good.

[Millyann64 in reply to BonnieSue]

I have 2 week wait but I've done this before got there and it's not him x

[Millyann64 in reply to BonnieSue]

I will do this thank you sue x

[BonnieSue in reply to Millyann64]

OK. Best of luck and outcomes to you!

[Robbie138]

hi Millyann64 i can't say anymore than what's been said (goood advice) but just wanted to welcome you to the forum,I wish your not in too much pain.

Take care and gentle 🤗🤗🤗

xx

[Millyann64 in reply to Robbie138]

Thank you x

[bluebell99]

Hi Millyann64 and a warm welcome to our friendly fibro forum where you can find help, advice, support and understanding, along with a chuckle or two to lighten the day.

Have you seen our Mother Site fmauk.org ? Here you will find a wealth of information including links and guides.

Getting a fibro diagnosis can bring mixed feelings and it takes a little while to absorb it. On the one hand it is good you finally have a name to your aches and pains and on the other hand, the realisation this is a chronic condition without a cure.

You are on the standard treatment for fibro but if it is not working then ask your doctor to try something else. Remember we are all different and what works for one person need not necessarily work for another, it is trial and error.

I do hope you will continue to come to the forum, we are a friendly and informative bunch!

Kay

[Millyann64 in reply to bluebell99]

Thank you kay x

[Madmeg11]

Hi Millyann64 and welcome, When I was diagnosed which was only sept of last year I was a bit gobsmacked my rhemy told me to educate about myself about the illness and pointed me to the arthritisresearchuk.org/arthritis site which has information about fibro. This helped! However joining and reading posts on this forum has been magic, they have really helped me to understand what is going on. I honestly thought I had early onset alzheimers because of the confusion ( putting my porridge oats in the microwave without any milk and putting coffee and a teabag in the same and I could go on!!! :)). I think its important to be in contact with other people who have similar issues. Keep your chin up and look after yourself x

[Millyann64 in reply to Madmeg11]

Awww thank you just reading I'm not alone thinking I was going mad helps I'm struggling as I thought I'd get better but realising I've to change how I live my life now I'm so active normally and finding the daily battle hard going x

[Madmeg11 in reply to Millyann64]

I miss a lot of things I used to do, but have adopted new things, I do a lot of colouring in especially when I'm in a lot of pain and tucked up in bed. it helps x

[Millyann64 in reply to Madmeg11]

I reading if head not to bad xx

[Madmeg11 in reply to Millyann64]

You just have to learn to let yourself enjoy your books and don't feel guilty about doing it, I find it easier to say to my husband I'm away to colour in for a while rather than I have to bed because I feel terrible, for me its all about trying to be positive about what I'm doing. You will find what works best for you, but honestly don't despair its a new lifestyle and its important to make yourself number one x

[Millyann64 in reply to Madmeg11]

Yes I've to learn that my kids need to realise I can't keep looking after grandchildren like I used to wears me out x

[BlueMermaid3]

Hello Millyann64

I just wanted to wish you a very warm welcome to our lovely forum

I don't know if this helps, but your reaction to your diagnosis is very common.

My best advice to you would be to learn as much as you possibly can about Fibromyalgia and how it affects you personally.

The last six words of that sentence are really important. Fibromyalgia affects everyone in a very different way and is basically tailor made to each person.

This is one of the main reasons that it can take so long to be diagnosed.

Many of us have other conditions to contend with too. I have had Fibro & ME for 36 years. I also have osteoarthritis, PTSD, Hypermobility Syndrome, depression and have periods of severe anxiety.

What affects me really badly may not affect you too much and vice versa.

Having a good GP is invaluable. We have a pack all about Fibromyalgia that you can request to be sent to your doctor/surgery. You can have it sent anonymously if you wish. The details are on our website fmauk.org

Because Fibro affects all of us differently you need to work out what your needs are and tell your doctor. You do have to be careful about doing this as no doctor likes being told what to do!

However, I have learned that I know my own body far better than anyone else does and so I need to manage my own issues as best as I can. For example I cannot exercise and so I have learned to adapt the yoga that I did for 20 years into gentle stretching.

I try to do this for 10-15 minutes every day. It really does help.

Take a deep breath, relax and know that you are now in great hands

We do recommend that our members lock their posts. Unlocked posts are open to the whole internet, not just our forum. I will pop back with a link to an easy to follow guide on how to lock posts. **

If you still find you need some help, or if I can help you with anything else, please don't hesitate to give me a shout.

Once again a very warm welcome and I look forward to chatting with you again.

Wishing you less pain and more peace

Lu x

Administrator

** Here is the link that I promised you. Click on the blue line and the post/guide will pop up:

healthunlocked.com/fibromya...

[Millyann64 in reply to BlueMermaid3]

Thank you amazing x

[TheAuthor]

Hi Millyann64

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

I have also pasted you a link below to the *NHS Choices cache on Fibro:

NHS Choices - Fibromyalgia:

nhs.uk/Conditions/Fibromyal...

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

[Millyann64 in reply to TheAuthor]

Thank you ken

[TheAuthor in reply to Millyann64]

Good luck my friend

[Fallabella]

I also have been diagnosed recently with fibromyalgia. I'm finding it quite confusing. I'm on no medications and have been told to exercise yet I can barely walk so really struggling to know how to exercise and I can only manage between 10 and 25 minutes of light cleaning before my whole body is shaking and I'm exhausted. Does anyone have any ideas? Please help

[Millyann64 in reply to Fallabella]

Oh I know I went to my doctor and demanded medication as like you pain is so bad all I can say is keep going to your doctor if no help change gp hope you get some help x

[Fallabella]

Thanks for your reply. It helps just knowing I'm not alone x

[Millyann64 in reply to Fallabella]

I've just only been diagnosed too I'm new to site and yes it's nice to know we not alone in thought I was going mad x