How bad is fibromyalgia?

[kokosnuss]

I ask because I sometimes (including today) get random skin pain to the touch in different places with no explanation - somewhere between a burning and bruising sensation.

I've also felt very tired this week to the extent that I've cancelled several plans, but just put it down to Christmas excess.

I googled fibro out of interest and found that IBS and headaches are also symptoms - I have both of these regularly.

However, I know fibro causes some people intolerable pain and fatigue to the extent that they can't work, go out, etc. I wouldn't say anything I experience is ever intolerable. Does this mean it's likely to be something else/just a coincidental combination of things?

Hi, koko ,
this may not be on your radar , but is something to definately consider. Many people that have actually been diagnosed with fibromyalgia , have instead , or have it in conjunction with Vitamin D deficiency. In your situation , I would check my vitamin D level. This time of year ( in UK ) we cannot make it from sunshine on skin , because , the UVB radiation in sunlight is absent from mid- Oct to mid-April. Vitamin d deficiency syndrome often shows up as a result of this. Of course our modern lifestyle does not help. Even in summer we are rarely outside exposing a good portion of our skin , in the middle of the day. Food nowadays contains very little Vitamin D in relation to our needs. Our body can make roughly 10,000 to 20,000 International Units ( IU ) in less than 1 hour sunbathing in strong sunlight. It is very difficult, by food, to get even 400 IU per day, even less than that if you are vegetarian.

       In your situation ,   I would be considering getting a blood level measurement of  25hydroxyD3      ,  that is the vit d  test.   You can get that through your doctor ,  or you can get one privately through several UK labs , here is one , it is an NHS  Lab ,   one of the biggest and cheapest.   <a class="break-all" href="http://www.vitamindtest.org.uk/" rel="nofollow" target="_blank">www.vitamindtest.org.uk/</a>     .    unfortunately you do have to pay , £ 28  if the test is not  doctor ordered.     However  if done privately ,  you will get a blood spot test through the post,  you send it back to the lab, your result is emailed to you within a week. Likely much quicker than going through the GP system.

  You should really consider having tests for other causes of your problem.  Like B12, thyroid, folate, iron etc.   Vitamin D  is a contender for your problems , but not the only one !

 You might like to have a look at the following thread. Where many people have had low vitamin D , what they did, how they responded. It is a long thread , but full of useful information. I posted quite a bit there , to try to explain what is going on.   <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>
 You will see a lecture by  Prof Holick,  one of the worlds experts on Vit D ,  I posted a  You Tube link .  he deals with Fibromyalgia  at about 28  mins in. 

I have posted quite a bit about Vit D here on  mumsnet ,    search my username ,  or get back to me if you need any more information.    Let me say that if you do get a test  , and it comes back at the low end , ie. 40 to 60  ,   then  by raising your level by supplementation , to the more normal human level of  120   to 140 ,  you will be helping your health improve a great deal .    Read that thread .. !!

  best of luck , hope this was helpful. 

BTBH
.

Thanks that's really helpful, I'm sure I read recently that the NHS now recommends everybody takes a vitamin D supplement in winter. I have some in the cupboard so may give that a try.

Also worth talking to your GP and seeing if they refer you to a rheumatologist. Fibro often piggy backs on other things, and looks like many other things. I was referred with suspected fibro and it was hypermobility syndrome. But there are different degrees of it as there are with M.E., not everyone has it as severely as some do.

I have fibromyalgia and unfortunately at the severe end and unable to work. I’m happy to speak to you about it, just didn’t want to put it on this post and scare others.

Bumbumtaloo sorry to hear that - out of interest looking back did you ever have a mild phase where it came on gradually, or did it just hit you one day and was always severe?

I have fibromyalgia I would say I'm mild to moderate in that I can still work but it takes a lot out of me I can literally collapse on the sofa after a days work. I am in constant pain which is kept bearable with opiates, I take loads of vitamins including vitamin D. If I have a night out I'll spend 2-3 days recovering from it. I sleep an awful lot and have a lot of headaches.

I'm currently going through the process of diagnosis of suspected fibro. I've had unidentified joint and muscular pain since the age of 18, along side IBS, depression, periods of extreme fatigue etc..

I saw a rhuematologist in July a full "MOT" so to speak, I had blood tests, X rays, bone density scans and she preliminaryly diagnosed hypermobility and potentially Ehlers Danlos Syndrome. I was referred for physio and advised that I would have 6 months of physio and then if no improvement I am most likely looking at a fibro diagnosis when I go back in February. The physio has helped with my shoulder pain but my leg and hip pain has not changed. I have cocodamol on repeat prescription (not ideal!) and do go through peaks and troughs health wise. For me the pain is definitely linked to my mental health, stressed or anxious and I'm also in terrible pain and struggle to do much. If I'm ok mentally the pain lessens and I can manage ok with only a few pain killers.

I don't want to scare either but my body mixes up hot and cold, which was a trigger for me to see a neurologist. Turned out to be MS. It's highly unlikely this is the case but it's something else to consider.

Also I do second Vitamin D advice; I am on 4000 IU for the rest of my life to try and postpone any MS relapse.

I hope you get it sorted soon.

kokosnuss I was initially diagnosed with various other things and it was last year I received my fibromyalgia diagnosis. I had Adenomyosis which resulted in a hysterectomy when I was 33, I woke up in considerable pain and have been in constant pain for 6yrs - including the pain from the Adenomyosis. I spent several years under the Gynaecology team as the main pain I experienced was in my lower left side of my abdomen, I also have nerve damage there. I had 18 hospital admission of approx 7 days each time in a 13mth period. As the years went on the whole of my abdomen has increased in pain. I was having pain and swelling in my hands, feet, knees and hips, it took me two years to mention it to my GP as I felt it would be dismissed. I was referred to rheumatology as they suspected arthritis of some discription and they eventually diagnosed the fibromyalgia.

After I was referred to rheumatology I had bone density scans, I have been in the menopause since I was 32 (the year before my hysterectomy) and take HRT daily and it was found I have reduced bone density in one of my hips, I take heavy duty vitamin D and calcium to hopefully reverse the damage or at the very least slow it down!

I also have severe mental health issues - starting from before my diagnosis and have attempted suicide twice and am now under the local psychiatric hospital. Because of the anxiety and panic attacks I very rarely leave my house, I even have panic attacks on the way to my mums house. I also have insomnia and avarage approx 3-4 hours sleep per night often none in 6yrs.

I take a cocktail of drugs daily to get through the day and have put on approximately 4 stone in weight from the side effects of various drugs, as you can imagine doesn’t help.

Sorry if I’ve put too much information for you but once I started writing I couldn’t stop!

I wish you good luck

Sorry should have said I had 8 fractures in my arms/wrist in 2 years and that’s what prompted the bone scan.

I also have no concentration and often stop talking mid sentence and normally forget what I was talking about, my husband has to prompt me.

I have Fibro. Its an utter bitch. Im 44 now & had it probably forever, yet only dx about 3 years ago. I can't work, partly because I have 2 ASD teens to deal with, (I also have ADHD myself) but also my pain is too severe. These last few days have been a CUNT! It hurts like an absolute bitch & nothing is working at all. Tramadol, which completely knocks my 24 stone husband out within minutes, does FUCK ALL for me. Many people with fibro commit suicide. I can see why, contending with this absolute bullshit every day! FFS! I really hope you don't have this SHIT! If you have any specific questions feel free to ask!

I have fibro and had to quit work due to fatigue but lately the pain and stiffness seem to be getting worse. I am not even 50 yet and will never work again. Its soul destroying.

Bad. Very bad. I'm in my 30s and am wheelchair bound but mostly bedridden as using a wheelchair is too painful. Can't work, can't move. It's no life.

I've had this for 16 years now. In the beginning it wasn't too bad, I dealt with it through painkillers, prescribed meds, massage, and when it got too bad a good measure of red wine as it helped to dull the pain.

Since then I've gone through the menopause. Stupid me thinking 'yippee', no more vile and agonising periods. Instead the general aching throughout my body worsened to the point where I simply couldn't move without vomiting, and general neuralgia raised it's head. So at any given time I now experience horrendous stabbing pains in my heels, head, groin, thigh, throat, neck, fingers, when walking upstairs my legs lose sensation and they won't move, I have to wait a short while before continuing - need I go on!
I've approached this with a gentle stretching and massage programme that I've devised - the docs only offering bigger doses of my meds which just caused me to sleep excessively, and to continue to feel drugged when awake.
So a year on from the end of menopause, and I'm functioning - just.

I lost my job and home through all of this, 'friends' walked away, and like pps have said, with my world shrinking to a small space around me, , an early death felt welcoming.

You ask 'how bad is Fibromyalgia?'
It is everything you would never want........from waking up to falling asleep again.
Horrendous pain - when standing, sitting, lying down
Exhaustion - when standing, sitting, lying down
Depression - due to the above - and more
Continuous disbelief from others - 'but you look so WELL'.

It took the life I loved, my independence, mu career, and gave me less than nothing in return. That is what my life became. Nothing.

I was diagnosed with fibro in 2001. At that point I was on the sofa for weeks with pain and no way of working; recurrent cystitis; and IBS.

I can only speak personally, so I'm not saying this extends to everyone else with the dx, but I found that my symptoms lessened considerably with a combination of exercise, good diet, and working through a very, very painful family history where I was unloved, unheld, and generally pushed away. Taking this triple-pronged approach has helped tremendously, to the point where my symptoms are totally managed.

I have fibro. I manage fairly well now but only because I don't work and don't really do much tbh. I'm still in pain everyday and constantly fatigued. I manage some volunteering a few times a month but I can cancel that if need be. When I was still trying to work I would regularly have periods where I'd be bed bound.

Its a bloody horrible disease. I did also have a vit d deficiency and fixing that helped some with the fatigue but not the pain unfortunately

I’m now 38 and all this started at 32. I lost the job I loved and also will never work again.

Simple things such as taking my DD’s to the park have previously resulted in a hospital admission because I have been unable to get the pain under control, I now avoid doing stuff like that with my DD’s but I do make sure I attend nativity plays and other school events. It leaves me in absolute agony and exhausted but it’s important to me.

I walk with a stick and sometimes use a wheelchair although I hate it but not much else I can do.

I’m now struggling with pain in my jaw which makes eating hard but I literally do not have the energy to see the GP about it, I will mention it at my next hospital appointment.

For me the hardest part is my DD’s have never known me any other way although they were both already born by the time the fibromyalgia kicked in (youngest dd was born when I was 32). It breaks my heart that they don’t have a ‘normal’ mum.

I say my fibro is like having permanent flu. I am cold, achey, muscles hurt, dizzy and soooo exhausted all the time. Some days are better than others, if I get plenty of rest, but if it is a cold rainy day and I have things to do or an appointment that involves going out of the house, it really takes it out of me , I can only lie on the sofa and rest, even my brain doesnt seem to work properly, I get so tired that I forget words, cannot concentrate on a TV programme, etc.

I was misdiagnosed with fibro for years (I had big doubts about it being that ). I was eventually diagnosed with Ehlers Danlos Hypermobility type that amongst lots of weird and wonderful symptoms also causes fatigue, muscle pain and burning.

I totally agree with taking vitamin D and a vit B complex supplement and thinking about other possible reasons (ie if you are perimenopausal, menopausal, stressed or unduly anxious, etc) that might explain how you feel.

I think I’d only accept a diagnosis of fibromyalgia if other possibilities had been ruled out. Same with ibs. To me that should be diagnosed when all other bowel problems have been excluded.