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Chronic muscle and bone/ joint pain.

6 replies

Camille01 · 26/11/2018 15:56

Just wondering if anyone has any suggestions about what this could be.
For the last four years ( 44 now) I’ve been experiencing muscle pain & weakness plus random joint / bone pain.
I’ve gone from being an active person to someone who dreads any form of exercise because of the horrible pain afterwards.
I’ve had bloods taken and they have come back showing my iron is 6 & ferritin is 3. Apart from that my phosphate is on the low side but only just. Everything else is normal.
I’ve read about fibromyalgia but tbh I don’t feel I tick all the boxes. I don’t have any issues with sleep for example.
It seems to flare up for no apparent reason and it’s definitely getting worse.
I see a chiropractor regularly and without it I don’t know where I would be.
I’m tempted to see a rheumatologist but at the back of my mind I’m scared to be told it’s fibromyalgia. I really don’t want to go down any medication route if I can help it. Feeling a bit sorry for myself today & I just want to fix this . Anyone have any words of wisdom? Tks

OP posts:
Bettertobehealthy · 28/11/2018 17:44

hi Camille
here is a thought that you might not have considered.
I wonder if your blood test included vitamin D .

The symptoms you describe , could , in some people, be due to low vitamin D.

                       Low vitamin D is quite often mis-diagnosed as Fibromyalgia .... the  symptoms can be similar. 

                     You mentioned that you have had blood tests ,    maybe your vit D was reported to you as normal.    There is a very wide range , that is accepted as normal here in the UK.     Often you will see 50   to 200 as normal,   being quoted , within the NHS . However,   to be below 100 is not a good place to be.  As explained below.   

                  IF   you came back with a result below 50 , then that would be classed as insufficient ,   and below 25 , that very often would be called deficient.   In some areas  a reading as low as 26 , is not treated .        You may be in one of those areas. ?    You are allowed to  see your blood test results.   If you have not ,   then maybe  it would be a good idea to see them. 


            You may not know ,   but  Vitamin D is actually converted to a steroid hormone , in the body ,  it is used to read genes within practically every cell in the body .   2000  of your 23,000 genes have  VDR's   ( vitamin D receptors )   From this you can probably see that many  many bodily processes rely on sufficient vitamin D  to keep those processes going.     IF  you have below optimum levels, various symptoms may show up. 

          As a primate, that evolved in Africa , over millions of years ,   our blood levels of vitamin D , have been 120 -140  in general.  Over the last few thousand years , we have changed our environment substantially ,  and now here in the  UK  , we have reduced our ability to make vitamin D in the skin, by avoiding sunlight , suncreams etc.  In fact,   in  the UK ,  because  we live above  50 degrees North Latitude ,   we cannot make vitamin D in the skin for a whole 6 months of the year  , over winter.  (  Nov - March etc  )  .           IF  you take one of us Westerners and put  us in the ancient environment  then our blood levels increase to  the real normal ,  i.e. optimum for us.  That is around 120 -140.     We have measured that in outdoor workers lifeguards etc etc.      

           Anyway the upshot  of all this explanation is ...   you might be well advised to get your vitamin D level  to around 120 - 140  ,  it could very well help you.        It is likely that you will need  3000 IU  to  5000 IU  per day , daily  , as ongoing supplementation,  whereby  your blood level will stabilise after 2 to 3 months.   I would advise checking  your level then .  Your doctor might remeasure ,    ( some will not) -  however you can get a  home test from  this NHS lab,   at Sandwell Trust , West Midlands.  Send them a bloodspot  on blotting paper,  they will analyse  and e-mail the result to you in about 1 week.     <a class="break-all" href="http://www.vitamindtest.org.uk/" rel="nofollow" target="_blank">www.vitamindtest.org.uk/</a>       IF  the test is not doctor ordered they do charge  £29 . 

   IF  you think this idea is of interest ,  then here is a thread where we discussed the effects of low vitamin D , it is long , but full of information. See if you can recognise yourself in their symptoms.

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

I have posted quite a bit here on Mumsnet about vitamin D , search my nick , for more info ,  or get back to me  if necessary. 

 Best of Luck , 

BTBH

PS. I have quoted all blood levels in nanomol/Litre , i.e 120 -140 ( nmol/l ) the UK standard measurement. Some countries such as the US , use different measurements , of ng/ml . I assume that does not apply to you ?

Camille01 · 28/11/2018 21:34

Thanks Better, I did have my vitamin D levels checked and they were on the low side at 38?( I think). I’ve since supplemented & they are currently at 130. Same with B12. They are both at optimum levels now. Trying to get my ferritin up but it’s hard going. 29 was the highest it’s ever been and I felt great then. So tired now it’s 3.

OP posts:
BlackInk · 29/11/2018 09:42

Hi OP - your iron/ferritin levels are horribly low - I'm not surprised you're feeling awful! Do you eat a reasonable diet, containing some iron-rich foods? Do you have heavy periods?
If your diet is ok and your periods are normal, your doctor needs to look into why your iron levels are so low. Do you have a copy of your full blood test results?

NeurotrashWarrior · 29/11/2018 10:28

Definitely get your ferritin up.

Towards the end of this prog there's new research on best ways to improve iron, using lower levels of supplements on alternate days.

www.bbc.co.uk/programmes/b09ply54

This is new research though, not usual practise yet.

I found I had to alter my diet to improve my iron. I reduced or cut out dairy during the day (I'd have a bit of cheese or milk last thing st night) as it can interfere with absorption. Calcium does too.

I ate iron rich food with orange juice eg rare steak and I think I took spatone (I honestly don't know if it was that that was effective or the diet change). I was able to increase ferritin better and more quickly than when I was on high dose iron tablets, and that was with heavy periods.

You need to clarify why your ferritin is low though. Rule out coeliac disease and ask the Gp to check fur any other reasons.

Have you had thyroid tested? This can lower ferritin levels but also iron is important in supporting the thyroid to make t3 and t4. (Find out your levels of you get a test and post here)

Camille01 · 29/11/2018 22:01

Thanks for the replies. I tested negative for Coeliac and my thyroid is within range. CRP was 3 and arthritis was negative along with Lupus test. I have heavy periods and am currently waiting to see a gynecologist for a consultation. My GP doesn’t want to go down the ‘ bowel ‘ route as I’ve heavy periods & she feels confident this is the cause. To be sure I privately got a stool sample done for microscopic blood levels. Also negative. My next stop is have a bone density scan done to rule out osteoporosis & the likes. Apart from that I don’t know what to do !! Feel like I’m chasing my tail.

OP posts:
Nermal37 · 19/09/2020 02:02

Hi Camille did you get a diagnosis? I am.in the same situation.

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