PIP - Fibromyalgia, and other issues

[Akira212]

Hi all. So my GP has said I may have borderline Fibromyalgia, I am 24 years old and I suffer from pain all over my body. With severe headaches/migraines on a daily basis. I also suffer from Heartburn/acid reflux and anxiety. I have been to neurologists for my headaches and have been referred back to my GP. I have been off last week as I am on new medication and currently getting used to them.

The plan was to go work this week, but I am still getting used to the medication and physically getting get my self out of bed is a joke, can someone please give me some tips and advice on how to manage Fibromyalgia? I do feel sad, I have been working a nice job in central London that I actually enjoy going to but I feel like I am slowly tarnishing my life :(

While attending counselling for living with pain, I got speaking to someone who recommended me to apply for PIP, c an someone please give me some hints and tips on this too?

Thank you all so much.

sorry forget to mention I have had a full blood test, I have a vitamin D and B12 deficiency. All other blood tests look ok I think.

I can't help with PIP, but if your GP thinks fibromyalgia please ask for a referral to rheumatology. They will properly assess you.

Ok thank you I will ask for the referral.

Pip is a benefit for people who need help with daily activities (cooking, eating, washing, dressing, communicating) or with mobility due to physical or mental health problems or other disabilities.

The citizens advice website has quite a bit of info. It suggests keeping a diary to see the help you need and help with the application form. It is possible to work and get PIP. You need as much medical evidence as possible.

I'm also linking to the criteria (descriptors) used in the assessment. To get standard rate of PIP you need 8-11 points and 12 or more enhanced. The points under daily living and mobility cannot be added together.

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/

www.citizensadvice.org.uk/Documents/Advice%20(public)/PIP%20–%20table%20of%20activities,%20descriptors%20and%20points.pdf

Hi Akira ,
Sorry to hear about your health problems. I believe you might be interested in this ... as follows :

although I cannot help with PIP etc , your evaluation of being short of Vitamin D and B12 , very much suggests that your problem could be strongly related to that . Fibromyalgia symptoms can arise and may be caused by those deficiencies. It makes a great deal of sense to correct them. Hopefully that will help you feel better.
The latest medical research has shown that Vitamin D deficiency is implicated in fully 50% of those that have been diagnosed with Fibromyalgia. Correcting the deficiency either eliminates or much reduces those symptoms. Consider perhaps are you vegetarian , ? that may explain why you are deficient in B12 , on the other hand Vit D deficiency can arise in many of the UK population , especially those with deeper pigmentation. Melanin acts as a sunscreen , and reduces the amount made in the skin under sunlight ,i.e. UVB radiation in that sunlight. Perhaps you are darker skinned ?

Anyway , IF you have low vitamin D , then you may very well improve your circumstances by increasing your level , to those levels that human beings had for many thousands of years , before we became “Westerners” living at high latitudes such as the UK. Levels of 120 to 140 are to be found in healthy humans , living that old fashioned lifestyle. What was your level ?
By supplementing appropriately ....you can reach those levels.

Please have a look here , where many people have increased their |Vitamin D levels , see if you can recognise yourself here.

www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect
Their symptoms, doses , how they improved etc etc. A long read , but well worth taking the time. You will see I posted a You Tube lecture in that thread , by one of the worlds’ foremost authorities concerning Vitamin D . In fact he discovered how to measure it in the blood , Professor Holick, is tipped for a Nobel prize. Please look at his lecture , at about 28 mins he talks about how the symptoms of fibromyalgia could be caused by vitamin D deficiency.

I have posted quite a bit about Vit D on mumsnet ... search my Nick ...for lots more information .

I hope this helps , and best of luck. If you need any more information , get back to me .

BTBH
.

Personally I would be asking for a coeliac screening

I see a specialist physio who is also a qualified nutritionist for my Fibromyalgia, many of her patients respond well to a low fodmap diet and a number including myself have been diagnosed as coeliac by gastroenterologists

Prior to my diagnosis I as already been diagnosed with profound vit d and b12 deficiencies which are classic signs of some form of malabsorption

I have fibromyalgia, diagnosed 12 years ago approx. At that time referrals were made to rheumatologists, but now, in our area at least (Wales) they no longer accept fibromyalgia referrals.

As regards PIP it is difficult to get with just a diagnosis of fibromyalgia - people who successfully get it usually have other conditions too.

Sorry to be so negative, been there done that etc. The only thing that works for my fibromyalgia is opioids, but I know that a lot of docs no longer give them.

I work and the only way I could hold down my job was to go part-time and work from home, the commute was slowly killing me.