Fibromyalgia

[HighFireSal]

I was diagnosed with Fibromyalgia seven years ago. I also have osteo-arthritis. I am in my late 40's and I am finding it almost impossible to manage the pain and fatigue. I am also anaemic and have low vitamin D.

I take naproxen and pregabalin for the pain and neuropathic symptoms. I have tried trammadol (knocks me out), morphine patches (they don't do anything) and co-codammol makes makes me feel nauseous.

My main symptoms are severe fatigue, severe brain fog, constant limb pain and joint pain, limb weakness, neuropathic pain, blurred vision and chest pain whilst I am experiencing a 'spell', headaches and IBS.

I was sent on a pain management course by my GP and learnt about pacing myself, relaxation and the importance of regular exercise, but even gentle walking results in me dragging my right leg and totally wiped out for hours.

At the pain management clinic other participants were complaining about not being able to go out after work because they were too tired, or do the ironing in the evening. It's been years since I worked and my limbs are too weak to lift an iron. Some days my DH or DD has to brush my teeth because I can't lift the brush. I can't concentrate to cook or read a book at the moment and my words are frequently jumbled or I can't find the right ones.

My rheumatologist refuses to send me for any more tests and I feel totally stuck ( tests for inflammatory arthritis came back negative). I WANT to be exercising, I WANT to be working, not just being fobbed off with a prescription (I've tried without the pain killers and I can't function).

I was extremely self-sufficient before this and it's killing me. I was a dancer and have a degree so I function at a fraction of the capacity I once did. I cannot work and spend many many days stuck in the house.

My life is stressful (2 DS with an ASD) but other people manage with complicated lives and still function. My DH is wonderful and doesn't mind looking after me one bit, but IMO he didn't sign up for this.

Is there anybody out there with similar symptoms? I can't help feeling that there is something else going on, although I recognise that I might just be clutching at straws trying to find a solution.

Does anybody have any views/experiences that might help please? I would very much appreciate your perspectives. I'm pretty desperate and my mental health is suffering badly as a result.

Hi highfiresal

                           It sounds like you have identified one of the causes of symptoms like yours ,  that would be vitamin D deficiency. I wonder if you have been treated , and subsequently had your blood level measured after that treatment , to see if that treatment was successful.  Individual response to supplements vary ,   by a factor of 6  to 1 .    So although you may  have taken the tablets you may not have absorbed them. It is quite common.     When you say you have anaemia  -      do you have gut absorption issues...?   IBS, Coeliacs , Bile malabsorption   Crohn's  etc.   These can affect how you absorb not only vitamin D  but other nutrients such as  B12  as well.     

              With respect to Vitamin D ,   you should aim for a blood level   around  120 - 140   nmol/L   .     This is considered to be a good  level by vitamin D researchers  worldwide.  It is the level that humans had throughout  our evolutionary history.    In the UK   nowadays   30 -  70  is common ,   i.e.  1/3  to 1/2  the level that our physiology expects.   
                     If you had treatment ,    have you reached these levels ? ,     you would expect to take around  5000 IU  per  day  over quite a few months to reach them , then check your blood level.  Look for  120 - 140.     If it is there or roundabouts,   great , carry on ,    if it is  a bit above , then maybe drop down  1000 IU .    If it is below , you may need  more  because you are a low responder.    

  Vitamin D   affects the regulation of at least  2000  genes ,  i.e.   10%  of your entire genome ,    from neurotransmitters to  calcium absorption effects.  Low  Vit D  can cause many symptoms. 

         Here is a lecture  by one of the worlds foremost experts  on Vit D.        <iframe src="https://www.youtube-nocookie.com/embed/hiGBVDcbFVk" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen></iframe>        In his clinic ,  he has found that  50%  of those diagnosed  with fibromyalgia  do in  fact have Vit D deficiency ,  which, when treated <strong>properly</strong> , reduces and even eliminates the symptoms.  If you are one of those 50%  ,  it makes a great deal of sense to investigate this.  

There are a few threads about  Vit d  and its effect ,  have a look here . I have posted quite a bit about it.   

  <a class="break-all" href="https://www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect" target="_blank">www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect</a>.              This is quite a long thread ,  but very useful , lots of information..!  

 This may be helpful as well :

www.mumsnet.com/Talk/general_health/2769969-fibromyalgia

 Best of luck  

   BTBH

Wow! I hadn't realised! Thank you so much. I will be following all that up. At least I have somewhere to begin.