Symptoms of Fibro

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Symptoms of Fibro

Postby Perfumeflower » Sun Feb 28, 2016 5:29 pm

Hi,

Sorry for the long winded post :roll:


I am a new member and have just joined this forum. I wonder if anyone can give me some advice with regards to my situation...

After many years of living with the symptoms of Fibro it has now taken it's toll on my home life and work life.I am now 51 and I have had these symptoms probably since my early twenties. And over those years I would keep going back and forth to my GP complaining of extreme fatigue, severe depression, concentration and memory problems, headaches,tender points and joint and muscle pain and stiffness which almost feels like my whole body has gone into Rigor Mortis :shock: disturbed sleep,tingling or a burning sensation underneath my skin,especially between my wrist and elbow in my right arm,(don't know whether this is connected to Fibro, and why is it just in that particular area)and stress and urgency bladder incontinence.

The GP I was seeing at that time passed these symptoms off as just me being run down or having some sort of virus.

Out of all these symptoms that are severe are the fatigue,concentration and memory problems,sleep disturbance,joint and muscle pain and the bladder incontinence. I have been signed off work since November 2015 because my job involves working with children and is highly stressful and demanding.

The job also requires you to have exceptional concentration and memory skills which I have really been struggling with. I am forgetting things all the time. Going to work whilst suffering with fatigue,joint pain and with virtually no sleep is mission impossible.

And going to work with bladder incontinence is extremely awkward and I would say that as my job is primarily working outside I avoid drinking before going to work. So I am not drinking as much as I should be and I know I get dehydrated which would probably cause further memory problems. I have been in my job for the last 5 years and just don't know how I was able to do my job as these symptoms have been getting progressively worse and have been affecting my job performance over the last 2 to 3 years. I think I was either hiding or ignoring them (if they are the right words) to some extent and hoping I would improve.

However,one day I had a meltdown in front of my work colleague and burst into tears sobbing my heart out. I couldn't take any-more. I went too see my line manager who referred me to the company's occupational health team. I had a telephone assessment with an adviser who deemed me unfit for work the same day.

The next day I also went to see my GP who subsequently signed me off work immediately and I have been off ever since. He also suggested that I have some blood tests taken. After having the first one he said that I may be going through menopause.But I think that was a hit and miss as after having the second test he then said I have an inflammation somewhere. So he suggested he may think about referring me to see a Rhuematologist.

However,after having the third blood test he said that my blood is showing a low level of vitamin D. So I have a severe vitamin D deficiency. He has given me 20,000 IU capsules to take for the next 10 weeks.Given this, he is now refusing to refer me to Rhuematology at this stage as he wants to see if it's the lack of vitamin D is causing all these symptoms.. I would rather go down all avenues to be honest to find out what is causing the inflammation and joint pain so I was really disappointed that my GP doesn't want me to see one.

What if after the 10 weeks nothing has changed? which leads me to my next question;

there will come a time where I will have to think about going back to work..but based on how I am now,I am not quite sure if I will be able to. As if/when I go back I will just be struggling again despite taking the vitamin D.

I am also finding it very hard to believe that it is just only the lack of vitamin D that is/has been causing all these symptoms for at the very least 30 years?

Can anyone give me some advice please?

many thanks in advance..


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Re: Symptoms of Fibro

Postby AlisonL » Sun Feb 28, 2016 5:48 pm

I don't believe that all your symptoms are down to Vitamin D deficiency, although it seems to be reasonably common in people with fibro, and I too had to take very high dosage boosters.
Incontinence is horrid - I have faecal incontinence rather than bladder but can sympathise. There are exercises you can do - maybe your GP would refer you to physio.
Have you looked up (and followed) all the advice about pacing yourself, taking great care to eat a good diet, cut out artificial sweeteners, take magnesium and maybe other supplements, gentle exercise etc etc. Do research it all and start treating yourself today - it's ridiculous to make you wait so long before you see a rheumotologist.
I am sure that others in this forum will have other suggestions - you could also look at the Facebook group " Fibromites with Hope" who are a lively and responsive bunch.
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Re: Symptoms of Fibro

Postby fatalrazkaz » Sun Feb 28, 2016 5:52 pm

I have been diagnosed with Fibromyalgia by a Rheumatologist (in 2012 after suffering with the symptoms over 20 years). I also have inflammation showing in my blood tests and was low in Vitamin D and put on Adcal D3. Need I say more. Push for a referral because you will need that diagnosis if you have to claim any benefits.
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Re: Symptoms of Fibro

Postby broadspeed » Sun Feb 28, 2016 6:02 pm

i have the same problems so i can realy relate to your story

i did have the luck of being send to the reumatologist first , and he discvered the vit d shortage ,

but he found nothing what would point towards reuma , or anything alike ,,

i have been in and out of hospital for the last 2 years now , for tests , tests , and more tests ,

problem for me is that my body will not take the vit d suplements , i tried everything , but the side affects where so bad that the hospital told me to stop taking them right away

what i did find out is that a lot of people do have a vit. d shortage , but it has never been said that vit. d has anything to do with fibromyalgia ,
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Re: Symptoms of Fibro

Postby Perfumeflower » Sun Feb 28, 2016 7:45 pm

Hi Alison, thank you for your reply. :-)

I take everything you have said on board. :-)thank you :-) Whilst I am at home I have been pacing myself as I can't really do much else as the fatigue and no energy is mind blowing. I try to eat a lot of fresh foods with salads,veggies etc and I would say my diet is fairly good. I don't smoke,drink alcohol or fizzy drinks.

I have been drinking buckets of water and fruit juice whilst I am at home because when I am at work I can't drink as much. I think I am compensating for being too dehydrated when I am at work. At least when at home I can run off to the toilet when I need to.But even then I may have the odd accident or two. :yikes:

I am going to see if it's worth seeing another GP for another opinion with regards to being referred to a Rheumy. 10 weeks is a long time to wait to see if the vitamin D supplements will work or not. Mind you, so is 30 years. Work wise, I really don't have that luxury of waiting.

I really don't know what my GP is thinking by not referring me. Because I have now gone passed the 13 weeks of receiving occupational sick pay since being signed off from work and if my GP deems me fit and ready to go back to work when I am not fit enough will cause me more problems. I just don't know what to do.

In his mind, he is thinking the vitamin D will work miracles. I wish I had his optimism! :crazy:


Hi Fatalrazkaz, :-)

Thank you for your reply.

My GP has given me Hux D3 to take. He obviously thinks this must be some sort of magic potion :roll: :crazy:

Seriously tho,yes indeed I will push for a referral but I think I will ask for another opinion while I do that.


Hi broadspeed,

Thank you for your reply, :-)

After reading all your above posts it does seem to be a common denominator amongst GP's to instantly blame a vitamin deficiency for all these symptoms.

I read somewhere that GP's don't really like to diagnose Fibro? is it because they don't know much about it or don't believe it exists? :nono:

Either way,everyone on this forum knows it does indeed exist. Including me. However,I have also read, and it is good to know that at least some Rhuemy's do recognise the symptoms and are actually sitting up and taking notice. We need more to understand...




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Re: Symptoms of Fibro

Postby Perfumeflower » Tue Mar 01, 2016 9:48 pm

Hi,

I have just come across something very interesting whilst I was googling regarding the link between Fibro and Vitamin D deficiency.

I have found this website >>https://www.vitamindcouncil.org/health-conditions/fibromyalgia/

This is an American study..

(Please accept my apology if I am not allowed to add this link - if this is the case I will delete it immediately :oops:)

Several studies report that people with fibromyalgia have lower vitamin D levels:

I have nit-picked and highlighted out the relevant bits in bold;

According to this study,in the United Kingdom, 43% of females with fibromyalgia had very low vitamin D levels compared to 19% without fibromyalgia.
In Belfast, Northern Ireland, people with fibromyalgia frequently had low vitamin D levels. The study also linked anxiety and depression to low vitamin D levels.

However, other studies have different observations:

In Israel and Brazil, vitamin D levels did not vary in people with or without fibromyalgia. In the same Brazilian study, there was no connection between vitamin D levels and pain intensity.
In Turkey, neither vitamin D levels nor bone mineral density varied in people with or without fibromyalgia.

In all of the above studies, vitamin D levels could be the result of disease condition rather than the cause of the disease. Thus, the evidence that vitamin D plays a role in fibromyalgia is weak at best.

There is no evidence that vitamin D reduces the risk of fibromyalgia. However, it may reduce inflammation. Based on studies of other diseases, it might be worthwhile to keep vitamin D blood levels above 30–40 ng/mL (75–100 nmol/L).

What do others think of the above study?


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Re: Symptoms of Fibro

Postby heather trippett » Wed Mar 02, 2016 1:47 am

hi igot my diagnoses of fm/cfs after 8 years and the last 2 years off them being like living in hell im only 39 and also am incontinent urinally :cry: i am recently diagnosed xmas 2015 and after seeing doctors specialist, test after test ct mri scans and generally prodded and poked they even tried a lumbar puncture well they didnt get far the pressure of the hands on my spine from her hands made me cry in pain :yikes: and i just could not stay still long enough due to restless leg syndrom :crazy: after years n years i made my own refferal to a rheumatologist instead of waiting n waiting for my neurologist to do it soooooo slow i got the appointment and she did a quick test on me no needles :-D asked me a few questions and after 8 long years she gave me a officil diagnoses of fm/cfs well i cried n cried both happy n sad tears :lol: so id say get that appointment go for it
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Re: Symptoms of Fibro

Postby karenodell » Wed Mar 02, 2016 11:49 am

Low vit d is part of fm i am on vit d supplements you need to go back to yr gp and ask them to refer to rhemstology so uou can be correctly diagnosed and commenced on meds to help with the pain good luck but be forceful with yr gp re the regerral and get a second opion if needed im sorry yr gp is not supportive x :-D
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Re: Symptoms of Fibro

Postby Perfumeflower » Thu Mar 10, 2016 7:30 pm

heather trippett wrote:hi igot my diagnoses of fm/cfs after 8 years and the last 2 years off them being like living in hell im only 39 and also am incontinent urinally :cry: i am recently diagnosed xmas 2015 and after seeing doctors specialist, test after test ct mri scans and generally prodded and poked they even tried a lumbar puncture well they didnt get far the pressure of the hands on my spine from her hands made me cry in pain :yikes: and i just could not stay still long enough due to restless leg syndrom :crazy: after years n years i made my own refferal to a rheumatologist instead of waiting n waiting for my neurologist to do it soooooo slow i got the appointment and she did a quick test on me no needles :-D asked me a few questions and after 8 long years she gave me a officil diagnoses of fm/cfs well i cried n cried both happy n sad tears :lol: so id say get that appointment go for it


karenodell wrote:Low vit d is part of fm i am on vit d supplements you need to go back to yr gp and ask them to refer to rhemstology so uou can be correctly diagnosed and commenced on meds to help with the pain good luck but be forceful with yr gp re the regerral and get a second opion if needed im sorry yr gp is not supportive x :-D


Hi, :-)

By way of an update since my last post, I decided to take the above advice and go and see another GP in the same practice. I am so glad to say that after describing my symptoms she immediately referred me to see a Rhuematologist. She wasted no time in doing that. I was probably only in there literally for two minutes! I explained to her that I came to see my usual GP a few times but he was not willing to refer me after prescribing me Vitamin D supplements for my vitamin d deficiency which I have to take for 10 weeks.

She agreed that no-one has the luxury of waiting 10 weeks as it is a very long time to wait whilst in pain. She is very keen for me to get a definitive diagnosis. And she said considering I have had these symptoms for a very long time which span back many years she was extremely surprised that I wasn't referred much sooner before. I said my usual GP was normally very good and that's why I stuck with him :roll: ....

Anyway...My appointment is on the 11th April so I am very pleased. :-)

Once I have been seen I will post back here to give an update...



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Re: Symptoms of Fibro

Postby Perfumeflower » Fri Aug 19, 2016 9:10 pm

Hi, :-)

By way of an update since my last post, I decided to take the above advice and go and see another GP in the same practice. I am so glad to say that after describing my symptoms she immediately referred me to see a Rhuematologist. She wasted no time in doing that. I was probably only in there literally for two minutes! I explained to her that I came to see my usual GP a few times but he was not willing to refer me after prescribing me Vitamin D supplements for my vitamin d deficiency which I have to take for 10 weeks.

She agreed that no-one has the luxury of waiting 10 weeks as it is a very long time to wait whilst in pain. She is very keen for me to get a definitive diagnosis. And she said considering I have had these symptoms for a very long time which span back many years she was extremely surprised that I wasn't referred much sooner before. I said my usual GP was normally very good and that's why I stuck with him :roll: ....

Anyway...My appointment is on the 11th April so I am very pleased. :-)

Once I have been seen I will post back here to give an update..



perfumeflower x[/quote]


Hi all :-)

It has been rather a long time since I last posted.I haven't had the energy to even turn the computer on most days. My conditions have been quite bad the last few months with the depression and anxiety,pain,stiffness and fatigue,disturbed sleep etc.I don't have a laptop or a tablet so I depend on my desktop computer which means I have to sit upright at the desk sitting in a computer chair which kills my back and only exacerbates my knee pains and lower back pains. :( I may have to think about buying a tablet soon so I can snuggle on the sofa ;-)

Anyhow, I said I would update as soon as I was seen by a Rheumatologist.

Well, I had my examination on the 11th April this year as planned and the lovely Rheumatologist was very patient (pardon the pun) as she thoroughly examined me from head to toe. Basically I have pain and stiffness in all 18 trigger points of my body. I also explained everything in fine detail regarding my multitude of other symptoms which I stated in my first post above. I told her the chronic fatigue is debilitating and how much it effects my movements on a daily basis. She confirmed that I have Fibromyalgia,Osteoarthritis,depression and anxiety and vitamin D deficiency.

The Dr confirmed that people with Fibro will 9 times out of ten also suffer from vitamin D deficiency. I told the consultant that my GP prescribed a high dosage of vitamin D3 to take for 10 weeks and he said that I will feel right as rain in a few weeks! (Yeh ok whats up doc!)I also told her that my GP had initially refused to refer me to Rheumatology given that he wanted to wait and see if the vitamin D3 would improve my symptoms after the 10 weeks. She wasn't amused.

Quite rightly she said all avenues should be looked at and my GP was not acting in my best interests to keep delaying matters. She explained that Fibro is a chronic illness with no cure and once diagnosed it is all about self-helping to managing the pain and fatigue and trying out different strategies living and coping with Fibro. She said I will most probably have more bad days than good (oh don't I know it already!)

I have since this month had another follow up appointment with the consultant to discuss recommended pain relief. She would like to trial me on a couple of painkillers,Gabapentin and Pregabalin. Or try Duloxetine,Tramadol and also a small dosage of Amitriptyline. She also said to try Codeine which I am familiar with. She has written to my GP to recommend these.

So I just now need to see a GP and see how I get on...


One thing before I take a rest...does anyone have a problem with their spell checker? This will make you laugh...

Rheumatologist is Haematologist or dermatologist

D3 is D,3 or Di

Fibromyalgia is Fibrillation

Fibro is Fibre,Fibroid or Fibrous

Gabapentin is Parenting

Pregabalin is Prefabbing

Duloxetine is Guillotine

This last one is hilarious -Amitriptyline is Pantyliner :crazy: :lol:


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Re: Symptoms of Fibro

Postby Butterfly8588 » Sun Aug 21, 2016 11:47 am

Hi perfumeflower,
I've just read your whole story, I can't imagine working with children with fibro, just looking after my little niece and nephew once a week leaves me feeling like I've been hit by a train and I hurt for days afterwards, so I take my hat off to you for sticking it as long as you did. Have you had to go back yet?
I'm really glad you got referred to a rheumatologist and she was nice, sadly I never got seen by one because my dr felt that a pain management consultant could do everything that a rheumatologist could. I've given up on anything actually working for me now, my last ditch effort at the pain management clinic had them recommend I start training for a swimmathon for the following year cos apparently my problem was that I'd lost confidence in my body.
I told him that I understand gentle exercise is meant to be good but I thought he was talking rubbish and didnt bother going back. The only thing they ever did for me was actually diagnose me with fibro. Incidentally I also have a vitamin d deficiancy as well as a folic acid deficiency but I assume the last one is just me.
I hope the medication works for you, I never found anything that did but I know a lot of people do at least find some relief. Incidentally the words that your spell checker is struggling on are medication and condition names, they aren't known to spell checker although it is amusing what they come up with.
I would recommend getting a tablet by the way, it's much better then sitting at a desktop. I read on mine to because with the kindle app you can increase the size of the font and also change the colour so I have white writing on a black background. It doesn't shine the light in your face so much and it easier on my eyes.
I hope you find some relief soon, this is a horrible condition and I wouldn't wish it on anyone.

Gentle hugs xx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Symptoms of Fibro

Postby Perfumeflower » Sun Aug 21, 2016 2:07 pm

Butterfly8588 wrote:Hi perfumeflower,
I've just read your whole story, I can't imagine working with children with fibro, just looking after my little niece and nephew once a week leaves me feeling like I've been hit by a train and I hurt for days afterwards, so I take my hat off to you for sticking it as long as you did. Have you had to go back yet?
I'm really glad you got referred to a rheumatologist and she was nice, sadly I never got seen by one because my dr felt that a pain management consultant could do everything that a rheumatologist could. I've given up on anything actually working for me now, my last ditch effort at the pain management clinic had them recommend I start training for a swimmathon for the following year cos apparently my problem was that I'd lost confidence in my body.
I told him that I understand gentle exercise is meant to be good but I thought he was talking rubbish and didnt bother going back. The only thing they ever did for me was actually diagnose me with fibro. Incidentally I also have a vitamin d deficiancy as well as a folic acid deficiency but I assume the last one is just me.
I hope the medication works for you, I never found anything that did but I know a lot of people do at least find some relief. Incidentally the words that your spell checker is struggling on are medication and condition names, they aren't known to spell checker although it is amusing what they come up with.
I would recommend getting a tablet by the way, it's much better then sitting at a desktop. I read on mine to because with the kindle app you can increase the size of the font and also change the colour so I have white writing on a black background. It doesn't shine the light in your face so much and it easier on my eyes.
I hope you find some relief soon, this is a horrible condition and I wouldn't wish it on anyone.

Gentle hugs xx



Hi Butterfly :-)

Thank you so much for your post.

It is so nice to know that we are not alone as Fibro is so debilitating and a very lonely condition to have.I discovered this website a while ago by just googling and I am so glad that I found it.

Your post is so easy to relate to.

With regards to the vitamin d deficiency,did your GP prescribe you vitamin D3 to take and if so did it make any difference for you?

My GP had put me on a 20,000 unit dosage to take one for three times a week for 10 weeks. That didn't make a slightest bit of difference as my GP had expected.However,despite that I do keep up with taking a maintenance dosage of one capsule a day.

Work wise, I had to leave my previous employment early this year as I was signed off from work back in November 2015 and I didn't go back as I resigned after a long episode of sickness. (I was also signed off in 2014).

I was looking after 10 children on a school bus at that particular time but I was really struggling to hold onto the job for the past few years until it came to the point where I had a meltdown (I am glad to say not in front of the children only in front of my driver,who was also a dear friend) and just sobbed everything out to her.She new I wasn't very well but at that time I didn't have a definitive diagnosis of what was going on. I had been suffering with chronic pain and fatigue and a multitude of other symptoms etc for too long which had spanned back to 2009.( I had suffered the depression and anxiety since 1997 and also my childhood and teenage years).Looking back I really don't know how I managed to hold down the job for nearly 6 years!).

Now of course I know the reasons behind why I have been struggling to get up for work etc due to the constant widespread pain and stiffness which is worse in the mornings,although it can be bad any time of the day regardless.

I am booking an appointment with my GP in the next week to trial me on various different medications for pain relief so I will have to wait and see how that pans out :crazy:

Laters x

:hugs: Perfumeflower x
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