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Fibromyalgia

(8 Posts)
veganburgerqueen Tue 01-Nov-16 11:42:52

I had a frustrating rheumatology appointment today. My consultant suspected that in addition to fibromyalgia I have inflammatory osteoarthritis as my blood tests showed slightly raised inflammatory markers. I was also very anaemia. She examined me and felt that my finger joints were indeed swollen so gave me a steroid injection which was amazing. No pain for six weeks. When I went back to see the rheumatology nurse a prescription for Hydroxychloroquine was waiting for me and after considering the side effects I decided to give it a go.

Fast forward three months and my consultant was on maternity leave so saw someone different . I explained that the new meds weren't working and he said that was because I only had a bit of wear and tear and Fibromyalgia and not inflammatory arthritis. When I asked him about the steroid injection he said he couldn't tell me why it had worked and offered to increase the Lyrica/Naproxen prescription which my GP has been trying to reduce!!! He basically said he disagreed with my consultants diagnosis and that I was welcome to another opinion if I wanted it.confused

I am so upset because I am disabled by my symptoms and have no life. I cannot work, cannot do much housework, and cannot play much with my youngest. I have two older kids with ASD and life is pretty bloody hard. I just want to unpick my symptoms so I can work at finding strategies to overcome them/ or appropriate medication but not to simply throw painkillers at them!!! I want to get well as I am only in my 40s but walk with a walking stick/ use a wheelchair and feel that if the steroid injection worked then my pain can't all be down to fibromyalgia and wear and tear. hmm

Anyone else been through something similar? Any thoughts about what I should do next? Thanks.

veganburgerqueen Tue 01-Nov-16 11:49:21

*should say anaemic blush

Bettertobehealthy Tue 01-Nov-16 14:48:37

veganburgerqueen ,

This may, or may not be useful ..... but at least it is something to consider. From your nick , I assume you eat no meat .

Do you know what your Vitamin D level is ?

Meat does contain some vitamin D , the metabolites are a mammalian hormone, i.e found in meat , and used by our bodies. It is mainly produced in our skin , by sunlight in the summer months.

It has been found , in the last few years,. that many people with low vitamin D , have been diagnosed with Fibromyalgia, when, in fact their symptoms are due to low vitamin D. ( Roughly 50% - according to Prof. Holick at Boston Medical centre ).

I would say , that it might be very advantageous to you , if you got your level measured, if it is low , then , by supplementation, daily, ( not weekly or monthly) to raise your level , to that found in healthy humans , living an ancestral lifestyle , that would be 120 to 140 nmol /l . You will see that many many people , here in the UK have levels around 50 nmol/l , some a lot less . It does depend upon your lifestyle. IF you are vegan , then you will not be getting much from your diet. You are very likely to be deficient.

It is very cheap, and easy to supplement ..... oil based capsules from Amazon , say , give you a years supply at about £12. IF you have any kind of gut problem , such as Coeliacs, Crohn's, malabsorption, IBS, gall bladder problem , then in that case , use a sublingual spray , which does not require absorption through the gut.

IF , your levels are low , then again IF, then for every 1000 IU that you take daily , then your blood level will rise by around 25 nmol/l , so lets say your level currently is 30 nmol/l , you will need 4000 IU daily. , to raise your blood level to roughly around 120.

IF you want to get your level measured , , ask you doctor , - he may have already done that , ? If not, then ask him.. !

If he is not forthcoming , you can get a test from an NHS lab , over in the west mids. , It is by post. a blood spot on blotting paper.
See here www.vitamindtest.org. It does cost £28 unfortunately. But to my mind , well worth it , if you are suffering as you are.

I hope this is useful,

here is a thread where we discuss, this and similar problems.

www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect

It is long , but very informative. I have posted in quite a few threads about the effects of low Vitamin D . Search under my nick , here on Mumsnet.

I wish you the very best of luck !

BTBH

PS. IF you are low , then, you should continue with long term treatment , don't expect results in a few weeks , that would not be normal . Daily supplementation , over the long term will be the key. A constant , daily dose is preferred for best results. In this country ( UK ), we assume that 50 ,nmol/l is sufficient , in reality , it is not . Our bodies evolved over millions of years, in hot climates, with levels around 120 to 140. Those levels are considered normal , even by NHS guidelines , because , people that live an ancestral lifestyle have them. However , because most people here in the UK , have levels have levels 1/3 that , then that is also considered normal. HOWEVER , that is a mistake . There is lots of evidence to show that.

Bettertobehealthy Tue 01-Nov-16 15:02:49

Whoops ..... I forgot the last uk bit . sorry. Try this ,

www.vitamindtest.org.uk

veganburgerqueen Tue 01-Nov-16 15:20:55

Wow, thank you Bettertobehealthy. That's such a simple thing to get checked out. I didn't realise I could be lacking in vit D and that it could make such a difference. Will definitely do that Asap. Thank you so much xxx

BeyondReasonablyDoubts Tue 01-Nov-16 15:55:31

With oestoarthritis, fibro and two children with asd, i'd suggest having a look at hypermobility syndrome (massive overlap with asd, causes early OA and fibro like symptoms)

Bettertobehealthy Tue 01-Nov-16 17:07:22

veganburgerqueen .

You are very welcome. When you get your test done , Please, be aware, that in the UK , many labs and doctors will tell you that 50 ,nmol/l is alright, it is not. ! In some other countries , and even some enlightened organisations here , they consider 75nmol/l the absolute minimum for optimum health. i.e The Endocrine Assoc. USA and others. Vitamin D researchers worldwide consider 100 - 150 nmol/l to be the level to aim at. Indeed , cancer suppression and other benefits seem to occur at levels above 100. (as shown by medical research worldwide)

ALSO ,

IF you are vegan , or perhaps you are a person with poor gut absorption characteristics , have you had your Vitamin B12 level checked , another very important compound, which affects many bodily systems.It is not usually considered involved with arthritis .... but , if it is low then perhaps it would be advisable to do something about it. ? Perhaps you could ask your doctor to check it. ? If it comes back below 500 , then my advice would be to have a look at that as well. Lots of other posts, by others, here about B12. Not my field however. :-)

If your vit D comes back low .... and you want further info , by all means get back to me ! Good Luck.

BTBH

veganburgerqueen Tue 01-Nov-16 20:23:37

BeyondReasonablyDoubts - thank you for that. I didn't realise there was a crossover between the two conditions. We are all quite 'bendy' and my DS has asked me to make an appointment at the docs for him because his limbs ache constantly too. I will investigate further!!

BTBH - you have given me some excellent advice and I am very grateful. I've felt for a long time that my vitamin levels haven't been what they should as it can be hard to keep an eye on your own nutrition when you have a familysmile.

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