Unexpected diagnosis: Hi I am new here... - Fibromyalgia Acti...

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Unexpected diagnosis

mrsbear85 profile image
33 Replies

Hi I am new here and have only been diagnosed with fibromyalgia for about 48 hours. To be honest I am in complete shock. I went to see my doctor for two reasons. 1st to see about a reduction in my antidepressant amitriptyline from 50mg to 25mg. 2nd and most important severe chest pains and shooting pains in my left arm.

Much to my delight she told me that I was not having a heart attack.

Instead she said I have Fibromyalgia. At this she gave me my reduction in meds as requested and sent me on my way.

I got home and I have done some research on the condition realising that I have most of the listed symptoms and have done for many years I just never connected the dots as I had never heard of this condition.

I have wide spread pain, extreme tiredness and visual migraines and the list goes on... after going to doctors many times and given no pain relief and made to feel like I have somehow imagined these pains I had just about given up until I saw this doc the other day.

I have made another appointment to see the doctor who has given me the diagnosis to let her know I have various symtoms but i am a bit nervous due to previous encounters with GP's.

Any advice would really help me out.

Thanks.

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33 Replies
Fibrofoggiest profile image
Fibrofoggiest

Hi there mrsbear (love the name :d )

Firstly I must welcome to what I consider to be the very best possible forum for help, support and advice :-) I would strongly recommend that you go and take a peep at our Mother site fibroaction.org where you will find a plethora of information and I can't recommend that highly enough .

It is hard to come to terms with the changes in your lifestyle and the knock on effects on nearly everything !

It might be a good idea to ask your GP if you could be referred to a rheumatologist and to a pain management course, both of those can be very useful to you.

Pull up a chair and join in, we are a pretty fun group and a fair few of believe that laughter releases feel good endorphins, and so if you look back a post called "Diamond Delovely" which will I hope make you chuckle. I also put up a picture with a caption each day in the hope that is may even just for one minute take a persons' mind off their pain and everything which is going on in their lives.

I much look forward to seeing you around the forum and as I said, so please join in, it does lift your spirits, I promise you :d

Sending positive healing vibes your way :-) :-)

Foggy x

mrsbear85 profile image
mrsbear85 in reply to Fibrofoggiest

Aww thank you for being so nice, finally I might be able to get some proper help for very real pain after years of being turned away. I will check out that website.

I do agree that laughter is the only way, chin up and try my best to get on.

I am sure you will see me around think I might need some much needed advice

Thanks Mrs bear:)

Fibrofoggiest profile image
Fibrofoggiest in reply to mrsbear85

I'm so pleased, so if you like laughter, you have definitely found the right place, some of us end up on the floor and struggling to keep ourselves together in time to reach the bathroom :o :d :d :o

Foggy x

Fluffymare profile image
Fluffymare in reply to Fibrofoggiest

Love your pics,

I am new to this site and was diagnosed with fibromyalgia in May this year after many years of suffering a great number of symptoms. And could keep my anxiety under control, however since July last year my anxiety really took off and brought my fibro on to a unbearable level. Was on Citalopram for ten years and it stopped working, tried several antidepressants, all gave me very bad side effects and no benefits due according to the Psychiatrist I was seeing to my sensibility, so at the moment on nothing except for Co-codamol 15/500 which have no effect whatsoever. .05 Lorazepam and Zopiclone sleeping tabs.

Four weeks ago my husband had a stroke and I am exhausted and in great pain having to go to see him in hospital he is 82 and I am78 having a job looking after myself. There is only my son and he lives in Melton Mowbray and I live in birmingham so having to do the bulk of visiting so have to look cheerful although I am in agony.

I feel really sorry for the young sufferers from this vile disease. About time they

Came up with a cure for it

Pat.

TheAuthor profile image
TheAuthor

Hi mrsbear85

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun!

I do not know your circumstances, but I have pasted you a couple of links to the GOV.UK site relating to disability benefits that you may want to consider? They are a long haul but if your Fibro affects your life too much then it is well worth applying?

How To Claim PIP:

gov.uk/pip/how-to-claim

How To Claim ESA:

gov.uk/employment-support-a...

As Foggy as already suggested, you may want to discuss referrals with your GP? And Rheumatology, Physiotherapy and Pain Management Clinics are a really good start, depending on which you feel are most urgent? Foggy is a National Treasure on here!

I have also pasted below a link to a page on our mother site, FibroAction, and in particular a printable fact sheet relating to Fibro that you may find very useful:

Printable Fibro Fact Sheet

fibroaction-public.sharepoi...

I genuinely look froward to bumping into you around the forum.

All my hopes and dreams for you

Ken x

Hello mrs Bear. A big welcome to the site. our foggy and Ken have given you a warm welcome and directed you to some useful information.

I would like to add that taking a list of symptoms to your GP on the next visit can be very helpful to you both.

I downloaded a list and then ticked off the symptoms that i have, making notes as to how each one affects me and took this to the doctors. They photocopied it giving them a permanent list that they can refer to.

Feel free to join in when ever you like with whatever is going on at the time.

Hugs sue xx

Whatamug1 profile image
Whatamug1

Good Morning (& a lovely one it is down here) and welcome to FibroAction. So sorry to hear you have FM - but you must be so relieved to now have some answers! I'd say that everyone on site has memories and doesn't have to look too far back to know how it's been for you & an infinite amount sympathies on that one - & well done to your Dr!!! You'll never be alone with it again. This site has given me my mind back & also taught me to pace myself. Time to move forwards - a day at a time. So happy for you. Ann

Hi Mrs Bear, you have been given all the relevant advice :) so I shall just say welcome to the forum. The water is warm, so dive right in :)

wizzy55 profile image
wizzy55

Hi Mrsbear, I was in same boat upto 4 1/2 years ago, several GP and hospital appointments later, i semm to have moved onto rhumatoid arthritis ?,

Still confused, All i can say is be prepared and dont be surprised by anything

Mdaisy profile image
Mdaisy

Hello Mrsbear85,

Welcome to the FibroAction community! As many have said you've been given many links to read so I won't add anymore. Please do look at our website for evidenced based information on Fibro and I look forward to chatting more with you here on the forum.

Best Wishes

Emma :)

FibroAction Administrator

Fluffymare profile image
Fluffymare

I would be very interested in that please.

We are not interesting enough to invest in a cure

nicnoc profile image
nicnoc in reply to Fluffymare

I signed up to fibroaction.org.uk, and signed a petition that they are taking to parliament to try and get funding for more research into the condition.

honor1a profile image
honor1a in reply to nicnoc

Oh that sounds good, will need to look for the petition & sign it too. Someone on my Facebook group sent me a like re fibromyalgia "what the doctors don't know about" I was surprised! It says wheat allergies, dairy allergies, could be contributing to the condition, but the mist surprising for me was "AMALGAM" dental fillings I happened to have a dental appointment 2 days after reading the article, dentist advised they have been in place such a long time to disturb them could expose me to it more as when being removed it creates a spray of all luttle buts of the amalgam, to replace with white fillings only done privately which I can't afford! But only way I would have them replaced on NHS is if my doctor wrote a letter stating it was causing me health problems alergic to etc, I checked ingredients of amalgam; silver, copper etc which have nickel in them I have allergy to nickel so next time at doctor I will mention it see what hapoens. Take care xx

bonsabrost profile image
bonsabrost in reply to honor1a

Someone I know mentioned this to me last week and I didn't believe them. I'm going to mention it to the dr and when I see him next week and see what they say.

Has anyone else heard this,? Ken? Foggy?

are there any other things you found I out you can share?

in reply to bonsabrost

you might have an honest doctor and therefore he will tell you the truth but don't hold your breathe and in fact its better that you do know if your doctor is either honest or dishonest or even just misinformed.

most doctors have no clue about things that they should know about and as we are all constantly told to just believe our doctors by the people who are making money out of us, If you owned a multi billion dollar pharmaceutical business would you not pay some people to become politicians thereby enabling you to keep on making huge amounts of money.

in reply to honor1a

mercury is the reason the amalgams cause so many problems in our fillings they continually let off a vapour when you grind your teeth, one test done on a child that had their first filling found that 430 micrograms were excreted out of the body the next day.

get these fillings out of your mouth there are around 540 scientific papers written on the toxicity of mercury tell as many of your friends as possible.

honor1a profile image
honor1a in reply to

Jinni 73 thank you so much for your reply, I will see dr next week to see if she will support my request to have them removed because of detrimental to my health, I asked dentist recently he said disturbing them would create a bigger problem for me. The info you gave is much appreciated. Take care, Hugs x

in reply to honor1a

yeah the dentists know these are bad for us but how can you tell your patients that you have and still are putting poisons into our mouths,

mercury is just about the most toxic metal there is so don't expect any help from your dentist unfortunately money has completely corrupted our society and most humans aren't strong enough to go against the grain.

once you have removed the fillings start taking either sulphur coarse crystal flakes or selenium (take every 3 hours or so at first and combine with lots of fibre as the fibre is the main way the body removes poisons out of it) both of these bind to the mercury and remove it out of your body, although your body removes around 1% of the mercury in it every day,

the next problem you have got is to find either of these elements that have no additives or anti-caking agents mixed in with them as they interfere with the absorption and they will only work as far as the GI Tract.

one of the reasons that wheat and dairy are bad for us is that they are dead foods and require our body to use other nutrients to neutralize these toxins, the milk is really high in phenols, some phenols are good for us like quercetin but most are not we get absolutely no nutrition from milk/dairy whatsoever not even calcium and the older you get the more likely the enzyme that we use to digest the lactose stops working therefore the lactose sits in our colon and bad bacteria then starts eating the lactose this causes lots more problems like weight gain.

Mdaisy profile image
Mdaisy in reply to nicnoc

Hello Nicnoc,

A petition we've retweeted do you mean? Please share the link. Could I ask you've signed up ?? Please explain further. .... for newsletter??

Emma :)

FibroAction Administrator

nicnoc profile image
nicnoc in reply to Mdaisy

I can't remember now, how I got on to it. I think it was through an email and link given. I have signed up.

Mdaisy profile image
Mdaisy in reply to nicnoc

Hello Nicnoc,

Was it this link maybe?

thepetitionsite.com/takeact...

If so, this is not a FibroAction petition. It says it was created by Diane Bradley. Great you've supported it tho'

Hope you're well today :)

Emma :)

FibroAction Adminsitrator

nicnoc profile image
nicnoc in reply to Mdaisy

I don't know, all I can remember was it was a petition that was being got together to send to parliament to hopefully get more funding into the condition. Is there such a petition ?

nicnoc profile image
nicnoc

you have a better GP than me, mine won't even take me on. He recognises the condition as he says he is a " muscularskeletal specialist" but all he will do is give me painkillers.

nicnoc profile image
nicnoc

How do I message you to get those details. I would also like to reverse my fibro.

Mdaisy profile image
Mdaisy in reply to nicnoc

Hello All,

Hearing others speak of reversing Fibro is positive news but please know that diet can be important and a diet in high antioxidants has been researched to possibly help people with Fibro. However, it is best to use a combined approach when trying to control the symptoms of Fibro using medication, stress reduction, relaxation, complementary therapies, CBT, lifestyle adaptations etc.

Please be aware a change in diet may or may not help and equally it also may not be the solution that people hope for!

Best Wishes

Emma :)

FibroAction Administrator

mitziblue profile image
mitziblue

Hi Sweetheart, so glad you found out what was wrong with you. Fibromyalgia it seems isn't diagnosed very much for the first of many years. It's more heard of now through. This site is awesome, and very helpful for any concerns and questions you have from people that live with it every day. I wish it would have been available when I was first diagnosed years ago. I'd get set up with a pain clinic as they are really helpful at helping you manage your pain. Hope this helps honey!!! xxxx Mitzi

Hi Mrsbear :)

Welcome to our friendly fibro forum where I came for friendly support and advice a little over a year ago and found many new friends to share our fibro stories and concerns with. I hope you like it here too :)

I can see that you've already been given some useful links where there is a wealth of information regarding Fibromyalgia to be found alongside much more including Information about the Charity FibroAction and what it does, which the web link and this forum belongs to :)

Please don't be afraid to ask any Q's as there is always someone just around the corner that may be able to help you or point you in the right direction :)

I look forward to seeing you around and send you fluffie hugs and smiles :)

xxx sian :)

lilian68 profile image
lilian68

hi mrsbear i would like to welcome you to the forum hope you find it realy useful as we all have firo & other conditions we look out fof each other.xxlilian

bonsabrost profile image
bonsabrost

Welcome to the group. We're here to help and there are afoot if us new to this too. I'm only a month after diagnosis.

I would definitely suggest you ask to be referred to the rheumatologist to get proper diagnosis using the correct method. I sure Ken had the link's to the site which will explain this.

Anything you need we are all listening.

Xx

proteolytic enzymes are meant to work for this but you need to source without any additives or caking agents

totalityofbeing.com/Framele...

livestrong.com/article/2680...

sodium bicarbonate is meant to help with the pain of fibromyalgia

mrsbear85 profile image
mrsbear85

Thank you everyone for being so nice. I am terrified about going to the doctor tomorrow it is all starting to feel very real. Wish me luck!!!:) Thankyou for the links to i should get started form filling it just does not seem so important at the moment:( xxx

Mdaisy profile image
Mdaisy in reply to mrsbear85

Lovely to hear such lovely feedback :) Thinking of you for tomorrow

mrsbear85 profile image
mrsbear85

FM and extreme hypermobility getting referred to pain clinic not sure what happens now. I have to go back and see GP in 4 weeks. Confused

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