Admin_AFMCGPartner in reply to KarenWW7 years ago

Hi Karen Thank You for telling us about what you feel caused your Primary Fibromyalgia. Continually pushing through with high levels of stress is often cited by people living with Fibro - mine was viral but again the illness was causing continually stress to my body for around 2 years before Fibro appeared 4 years later.

Just out of interest, when was the last time you had a blood test as it is good to try to ask the Dr for them regularly to look at your B12 and Vit D levels, as both can make the symptoms worse.

You may have tried this before, but I thought I'd mention anyway Progressive Muscle Relaxation in bed before trying to sleep? You can find out about it here and how to do it too > anxietybc.com/parenting/how...

I hope these suggestions may help

Best Wishes

Emma

KarenWW in reply to Admin_AFMCG7 years ago

Blood tests done 18 months ago on path to diagnosis. Most of my fibro is kept in check with amitriptyline and helps sleep now. But hormone fluctuations or just doing too much or too many repetitive movements or being tired cause it rapidly to flare.

Reply (0)Report

Admin_AFMCGPartner in reply to KarenWW7 years ago

Hi Karen,

Bloods tests need to be done more regularly it could be you are deficient and you and your DR's are unaware. I had mine done like 2 weeks ago and put on high strength Vit D and I tend to have them done at least every 4 months. I would consider asking your DR to take more bloods due to the proportion of people with Fibro who have B12 or Vit D deficencies.

If you search on here and even if you are a member of Fibromyalgia Action UK (who I volunteered for from 2012-2015 hence the knowledge) you'll see many posts come up about this subject

If you do have a test, please do come back and let us know how you get on

All the best

Emma

Reply (0)Report

KarenWW in reply to Admin_AFMCG7 years ago

Thanks yes had often wondered about it. My gp is not one of those who seem to treat fibro as in the head. However she does seem to put many things down to fibro now i have been diagnosed with it, without doing regular checks. Her answer usually just seems to be cant do anything as fibro and take more vitamins or supplements without testing.

Reply (0)Report

Admin_AFMCGPartner in reply to KarenWW7 years ago

Hi Karen

I've been there and had a few DR's telling me 'It's in my head' - try seeing another DR and ask for a blood test.

Maybe take information with you to explain your concerns. Do let us know how you get on

Best of Luck

Emma

Reply (0)Report

Admin_AFMCGPartner in reply to Greeny5137 years ago

Hi Greeny513,

Thank You for your comment

Being newly diagnosed and the whole diagnosis process is really hard, looking back 10 years ago on the 2 years it took to get my diagnosis was extremely stressful.

October 2016, it not that long ago so please know it is natural to feel this way as you will ultimately start a journey to acceptance. A road which is hard (not going to lie) but one you will move along at your own pace. They say it is a process of denial, anger, bargaining, low mood to acceptance.

That being said there are many of us here who can help with a friendly word, a piece of advice, signpost you to good information, suggest considering pain clinic reviews or hydrotherapy and talk about medications that may help (although what suits one may not suit another)

We understand how awful it is and how low you must feel but with empathy and understanding you will slowly become stronger and learn to live with Fibromyalgia. I know that seems a long way off but please keep fighting and stay strong

We are here to chat and that is what HealthUnlocked is for!

All the best

Emma

Admin_AFMCGPartner in reply to Greeny5137 years ago

Hi Greeny513,

Sorry for the long reply ...eek

No, you must keep fighting - I know it's hard and it doesn't make any difference to hear but a majority of us, I'd say 80% go through the exact same troubles financially due to the reformed welfare service (as I used to volunteer for FMA UK for a while who merged with FibroAction where I was Administrator for 3 years and heard it time and time again).

You need to get money coming in to help financially, to stop you feeling like you are a burden or have no self worth but this simply isn't true - you couldn't help being ill could you.

You need to reapply for benefits (if you can, don't know when you last applied?) and if you have a MIND near you they make have an advocacy service to help the vulnerable complete the forms or of course the Citizen Advice Bureau will help. Answer the questions on your worse day. If you don't know what you are you family are eligible for you can go to CAB or talk confidentially online to Turn2Us (turn2us.org.uk) and they will advise what you can apply for.

If you need to claim JSA either now or during reapplying for benefits, as I believe during mandatory reconsideration you need to temporarily need to claim JSA then you can complete the form below. It means you officially let the Job Centre Plus know about your disability and it's symptoms which can help reduce the problems with sanctions if you cannot keep up with the requirements of JSA. (PDF link below to read it's explains in more detail and should give a form to complete)

citizensadviceipswich.org.u...

Regarding, your medical condition, you need to speak to the consultant about your medications - know what can be used for Fibromyalgia and ask about them read nhs.uk/Conditions/Fibromyal...

Be an expert patient by reading up on everything but when you put it to the specialist, say something like 'I am finding it hard living with the symptoms and I feel my medication isn't helping - I've heard about X,Y,Z - Do you think this may work for me? Maybe I could trial it for a while?' Plant the seed but let him make the decision!

If after this you are still unhappy with your Healthcare Provision, you have a right to a second opinion (I had to use this route as they first diagnosed Frozen shoulder but why did my pelvis hurt?) It is a bit of a journey once again, as sometimes they order the same tests you've already had or you could try asking to be referred to London to the FMS Clinic at St Thomas's Hospital (however due to funding coming from another pot it can be difficult to get but you can at least ask)

I know how utterly frustrating this can be - but to be frank you have to keep going so you can get to a point where you have a better quality of life and the 'bubbly you' shines through again. Maybe it won't be completely the same as before but you are still you and through the good times you will shine through and flares just write them off as a bad patch!

The other thing I would like to mention is the 'Push & Crash' cycle - everyone of us with Fibro has been there , we do too much and then we are out for days. You need to try pacing, doing the same everyday, do not push and again it takes a bit of getting used to but accept what you can do and what you can't at this time. If you can do the same amount each day adding a tiny amount of extra exercise every now and then, until slowly you can do more and more.(this is of course after getting your pain and symptoms are under control, build up slowly)

Chronic Illness does take it's toll but we are still the same. Do try and keep in touch with friends. Ask if they would like to read about Fibro, to understand about it. Plus if you can join a local group, meet up with people who actually do know what you are going through.

I guess the main message is get support and keep fighting. We are here to listen when things aren't going so well and when they going great too!

Hope this helps

Emma