Hi I’m new

[Southerngirl81]

Hi I’ve been struggling with fibromyalgia for over a year now, I’m a nurse but unable to work, I’m unable to claim esa as I’m ‘fit to work’ yet being dismissed due to ill health. I feel like I’m deteriorating, the pain, the depression, the lethargy, the waking up in the night is all getting worse. I’m on setraline, amitryptaline and co codamol but don’t feel I have found the right medication for me. Help!

[Crafty65]

Hi I finished from nursing due to spinal injury and didn’t know I had fibromyalgia also . It’s been an uphill struggle with benefits etc and I feel the same as yourself . I’ve lived with it for a lot longer and it does get easier in that you learn what you can and cannot do , can and cannot cope with . Just hold on in there .

[Dizzytwo Moderator]

Hello and welcome to our group. I see you have left your post unlocked. For privacy reasons you may wish to lock this and future posts

You may like to read our new members post that also has a few helpful links I'm sure you will find useful especially on forum privacy.

healthunlocked.com/fibromya.......

The forum tends to be a little quite on the weekends. But if I can help you with anything please ask. Xx

Momo

[ruthmel1]

Hello and welcome, Here are the things I do to help cope;.

Your G.P can only give you medications or a referral to a pain clinic or Rheumatologist if you havnt already had one. Most of living with Fibro is self management

PAIN MANAGEMENT

1-First and foremost CBD oil. It is honestly THE best thing I’ve ever done for the pain! I go on about it all the time but there are plenty of posts on here about it as alot of us use it for the pain. Have a search.(I have a beginners guide to starting CBD oil and the best ones to buy if you’re interested) By taking CBD oil I have reduced my Morphine by 100mg to 60mg a day, stopped my breakthrough Morphine Pre Gabilin and pramipaxole-all under G,P supervision of course!

2-Hot or cold-I prefer heat. A boiling hot bath helps my muscles.I’m lucky enough to have a Spa bath fitted and love the jets on my body. I use magnesium salts in the bath and Aromatherapy oils.

3-TENS/or in my case I bought a Microcurrent Alpha Stim machine which I swear by (themicrocurrentsite.co.uk/) .\they’re not cheap. My reasoning was that Fibro is a lifetime condition so it was worth spending for something that really works for me. You can lease the Alpha stim machines if you go on their UK website and search for someone hiring them out in your area. Then you at least know it works before you lay out so much money (They’re around £600-you can pay monthly)

4-Pacing; Learning how much you can and cant do and when to rest to try and avoid flare ups. Flare ups happen regardless and there are some occasions when you know you will overdo it and pay for it such as a wedding or day out with the family. Those are times when you have to weight up if the pay back is worth the event itself. As long as you dont do it alot and generally pace yourself in day to day life .

5-Supplements, I take Vit D in large doses 4000mg a day, Malic Acid and Magnesium for muscle pain. Some people find Turmeric helps-I didnt, Then for trying to help the energy I take Glutathione, L glutamine and Co ENzyme Q10.

6; Help with Care Dont be too proud to ask for help if needed from your partner, family kids etc. My Husband is my carer and as I also have M.E he does absolutely everything from my personal care to cooking, cleaning, shopping etc.

Investigate whether you can get social services /O.T help with an assessment.You may be entitled to equipement, and/or get your partner a carers assessment. My hubby gets a small allowance for himself for a carers break which he uses to go clay pigeon shooting and escape the daily pressures of caring

7-Dont be too proud to use a wheelchair or scooter out of the house if you need to, if it means you can be mobile. I went from using a walking stick to having to use a wheelchair/scooter. I was lucky enough to just scrape in getting an NHS wheelchair before the rules changed. We bought the scooter.again they’re expensive but you can get second hand ones on Ebay.

8-DIET Alot of peeps with Fibro/M.E adopt gluten free, dairy free, wholesome diets. Eating as much fresh and unmanufactured foods as possible. Paleo or even stricter Keto are things to try and will even out your blood sugar and help if you need to loose weight. They possibly help with symptoms in some people.

9 Stress management; Having your life turned upside down and living with 24/7 pain and exhaustion are stressful events in themselves and any added stressors cause major flareups in me and have resulted in me deteriorating over the years. ALot fo it you cant do anything about such as loss of a parent etc-but I meditate, try Mindfullness and try to switch off for 10 mins or morea day just to be peaceful even if I lie down with my eyes shut and listen to music rather than a meditation tape.

These are the things I do.

[ruthmel1]

Hi.I fell for you. ESA isnt fit for purpose. Did you apply and get rejected? If so did you appeal? Its ridiculous. You have to be virtually paralysed for them to give it to you!

On the subject of help heres how I help my Fibro.

Your G.P can only give you medications or a referral to a pain clinic or Rheumatologist if you havnt already had one. Most of living with Fibro is self management

PAIN MANAGEMENT

1-First and foremost CBD oil. It is honestly THE best thing I’ve ever done for the pain! I go on about it all the time but there are plenty of posts on here about it as alot of us use it for the pain. Have a search.(I have a beginners guide to starting CBD oil and the best ones to buy if you’re interested) By taking CBD oil I have reduced my Morphine by 100mg to 60mg a day, stopped my breakthrough Morphine Pre Gabilin and pramipaxole-all under G,P supervision of course!

2-Hot or cold-I prefer heat. A boiling hot bath helps my muscles.I’m lucky enough to have a Spa bath fitted and love the jets on my body. I use magnesium salts in the bath and Aromatherapy oils.

3-TENS/or in my case I bought a Microcurrent Alpha Stim machine which I swear by (themicrocurrentsite.co.uk/) .\they’re not cheap. My reasoning was that Fibro is a lifetime condition so it was worth spending for something that really works for me. You can lease the Alpha stim machines if you go on their UK website and search for someone hiring them out in your area. Then you at least know it works before you lay out so much money (They’re around £600-you can pay monthly)

4-Pacing; Learning how much you can and cant do and when to rest to try and avoid flare ups. Flare ups happen regardless and there are some occasions when you know you will overdo it and pay for it such as a wedding or day out with the family. Those are times when you have to weight up if the pay back is worth the event itself. As long as you dont do it alot and generally pace yourself in day to day life .

5-Supplements, I take Vit D in large doses 4000mg a day, Malic Acid and Magnesium for muscle pain. Some people find Turmeric helps-I didnt, Then for trying to help the energy I take Glutathione, L glutamine and Co ENzyme Q10.

6; Help with Care Dont be too proud to ask for help if needed from your partner, family kids etc. My Husband is my carer and as I also have M.E he does absolutely everything from my personal care to cooking, cleaning, shopping etc.

Investigate whether you can get social services /O.T help with an assessment.You may be entitled to equipement, and/or get your partner a carers assessment. My hubby gets a small allowance for himself for a carers break which he uses to go clay pigeon shooting and escape the daily pressures of caring

7-Dont be too proud to use a wheelchair or scooter out of the house if you need to, if it means you can be mobile. I went from using a walking stick to having to use a wheelchair/scooter. I was lucky enough to just scrape in getting an NHS wheelchair before the rules changed. We bought the scooter.again they’re expensive but you can get second hand ones on Ebay.

8-DIET Alot of peeps with Fibro/M.E adopt gluten free, dairy free, wholesome diets. Eating as much fresh and unmanufactured foods as possible. Paleo or even stricter Keto are things to try and will even out your blood sugar and help if you need to loose weight. They possibly help with symptoms in some people.

9 Stress management; Having your life turned upside down and living with 24/7 pain and exhaustion are stressful events in themselves and any added stressors cause major flareups in me and have resulted in me deteriorating over the years. ALot fo it you cant do anything about such as loss of a parent etc-but I meditate, try Mindfullness and try to switch off for 10 mins or morea day just to be peaceful even if I lie down with my eyes shut and listen to music rather than a meditation tape.

These are the things I do.

[twinks123 in reply to ruthmel1]

Hi ruthmel1

Can you please send me the link to starting CBD oil and where to purchase? Thank you Twinks x

[ruthmel1 in reply to twinks123]

I can PM it here or email if you wish. if you trust me with you e mail address then PM me

[VintageMustard in reply to ruthmel1]

Hi, I’d like the CBD oil link too.

[ruthmel1 in reply to VintageMustard]

I can PM it here or email if you wish. if you trust me with you e mail address then PM me

[VintageMustard in reply to ruthmel1]

Please pm.

[twinks123]

Hi Southerngirl

I am new to fibromyalgia

Also a nurse, midwife and health visitor. Retired early due to breast cancer which brought on the fibromyalgia they think. I am on same meds as you and looking for suggestions to make life easier.

I am sorry you are having problems with ESA, it’s a terrible thing to have to go through.

Twinks

[releasethemagic]

There are 2.3 million people receiving ESA and 3.7 million receiving Personal Independence Payment (PIP) or its predecessor, Disability Living Allowance. Given your situation, you might be eligible for both.

If you have claimed ESA and been found Fit for Work, you could try for Mandatory Reconsideration and then an Appeal, if your opportunity to do so has not expired. If it has expired, you can make a fresh claim. Get help completing the forms and get any medical reports that have been used to justify your ill health dismissal. If you are in a Trades Union, it's time to involve them, as usually you get a better outcome. If you are just assuming you are fit for work, claim ESA. Advice can be found here

durham.gov.uk/media/3903/Wo...

bristol.gov.uk/documents/20...

You can also claim PIP, irrespective of whether you work or not. It is meant to cover the extra costs of being disabled and is based not on your diagnosis or illness, but on what you can and can't do.

Helpful advice can be found here

pipinfo.net/

drive.google.com/file/d/0Bw...

Also Benefits and Work produce some great guides. Contact Janet the FMA Benefits Advisor for more info and support.

benefitsandwork.co.uk/b-for...

[jayneangel]

I would echo reapplying for was and also PIP, if you can find support agency it's good to get advice on how to fill in the form, because often it's not necessarily what you say or your condition it's how you say it and describe your issues. A disability support organisation would be able to guide you. Hugs xx

[jayneangel]

Esa not was