Is this Fibro?

All your fibromyalgia experiences, questions and answers.

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Is this Fibro?

Postby Padster » Thu Sep 17, 2015 6:36 pm

Anyone else find themselves asking "is this Fibro?" constantly?? I'm newly diagnosed and still confused about what is and isn't Fibro and how come my symptoms seem to be much milder than the ones I read of on here and other people I've spoken to.

e.g. today, leaving work I suddenly find my left ankle is painful (seems to have stopped now). Then on the way home in the car (and still now) the right side of my jaw is quite painful, hurts to open my mouth up wide enough to eat. Each new pain or other symptom I get, I ask myself "is this Fibro?" I've had "random pains" for as long as I can remember and just passed them off as "random pains", it's only now that I've had the diagnosis that I now think "is this Fibro?". My tummy has recently started feeling a bit bloated and painful (second time in the last few months) ... I've never, as far as I'm aware, suffered from IBS, but is this IBS and therefore Fibro??

I'm not sure I'm explaining this right! I suppose I'm saying have I always had Fibro or am I just noticing things more because of the diagnosis?

As for the milder symptoms, I can still carry on life as normal, I have pain, I have confusion, foggy moments, mild fatigue, strange feelings in my legs sometimes, tummy pain, but I am not incapacitated.

I feel a fraud sometimes. Am I making any sense?? :crazy:
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Re: Is this Fibro?

Postby Jud.smiles » Thu Sep 17, 2015 6:57 pm

hi,
I have just posted for the first time, I feel so similarly its a bit spooky, I'm taking meds but have no concrete diagnosis, leaving me, as yet in limbo ... feeling a fraud, your post was eloquent and echoed my thoughts.
well wishes from me to you
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Re: Is this Fibro?

Postby Padster » Fri Sep 18, 2015 9:00 am

Hi Judie - I've found your other post, yes, we do sound like we are both struggling with the same issue! You are at about the same stage as me, I've had tests for everything else, just waiting for some info on autoimmune tests I had which showed I had low levels of some immunoglobulins. But having googled what it means if you have low levels of the particular immunoglobulins they point to constant ear and sinus infections (which I was plagued with as a child) and don't seem to explain all the Fibro symptoms I have (of course, I'll wait until I hear that from the GP before I write it off as unrelated!!). My GP is pretty sure it's Fibro - I basically wrote down all my random symptoms, handed her the list and she immediately said "Fibromyalgia"! I go back to see her on Tuesday. She has already prescribed me amitriptyline which I've finally got used to after 5 weeks. They are not making any difference to my chronic pain so may have to up the dose (I'm only on 10mg). Is that the meds you are on?

When the GP first told me it was Fibro, I was relieved as I felt that I'd been going a bit mad and it was nice to have a reason for my confusion, fogginess, clumsiness etc, but now I'm thinking, I might be better off not having been diagnosed and just carry on battling through the pain and other stuff as I've always done without worrying that it might get worse.

All the best to you too!
In a perfect world, every dog would have a home and every home would have a dog
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Re: Is this Fibro?

Postby Sarahjbass » Fri Sep 18, 2015 9:16 am

Omg reading your comments is like its my words. That's exactly how I feel !!
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Re: Is this Fibro?

Postby Padster » Fri Sep 18, 2015 10:52 am

Hi Sarah! I'm so glad I'm not the only one! What's your Fibro story?
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Re: Is this Fibro?

Postby Susan Stokes » Fri Sep 18, 2015 6:47 pm

Hi to all of you - I think we've all been there in the beginning. Not everyone will have all the same symptoms (there seem to be so many of them now), therefore we all have varying degrees of ability. We also have to find our own ways of coping. The first thing I would say to all of you newly diagnosed is don't push yourself if your body is saying 'no'. Listen to your body and if it says rest then do so. I think this was the hardest lesson for me to learn. Secondly, try to stay positive, not always easy but try concentrating on the things you can do rather than the the things you can't do anymore.
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Re: Is this Fibro?

Postby Padster » Thu Sep 24, 2015 1:50 pm

Just wanted to share a very positive visit to my doctor yesterday. As background, I recently changed from a male (probably in his 60s) doctor to a younger female doctor (less than 40 I would guess) - I wanted a female GP due to pre-menopause symptoms etc.

The first visit I had to my new doctor was the one mentioned above when I took my list of symptoms in.

I saw her yesterday for a follow up and she's referring me to an immunologist (for my low immunoglobulin levels), and an audiologist (to see if there is any other cause for the permanent party that goes on in my head - ringing, throbbing, whooshing and whistling noises).

Anyway, the point of this is that I told her that I felt a bit of a fraud as so many FM sufferers seem to be suffering much more than I am and she told me not to belittle my own symptoms and that I should think of it like Asthma. Many Asthma sufferers manage perfectly well with daily life just using their inhalers when needed, but they are no less suffering from Asthma than someone whose symptoms leave them constantly breathless and often ending up in hospital. It's still Asthma, just different degrees of it. I still have FM, I'm just fortunate that my symptoms are milder than those who are incapacitated by it.

I love my new doctor!! She's so supportive and understanding, she even said to feel free to come in if I just wanted to talk things through with her. How lucky am I?!
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Re: Is this Fibro?

Postby Jud.smiles » Sat Sep 26, 2015 5:37 pm

Thank you for your replies
I was prescribed codine 60mg for times a day and 10mg of amiltriptyline at night. .. my doctor changed that to the decreasing over two weeks decreasing codine doses in order to not get any side effects! Big laugh! Next i waz prescribed gabapentin in an increasing dose as tolerated on 30mg my left hand and wrist ballooned and I was itching like a nettle sting sensation. My Dr suggested to try another dose to confirm and yup the same thing happened. ..I was then prescribed 50mg nightly amiltriptyline dose and I'm taking the codine unsure that it helps?
I don't know if a diagnosis could be any worse than not knowing? Feel a bit of a fraud joining the forum without a diagnosis especially when others symptoms are so severe but I don't know where to turn and it all rings true like the bells that ring in my ears!
I hope my drivel makes some kind of sense Padster? It's good to hear from someone with similar issues..I'm not a social media type but caution to the wind I need some help.
I'm back in the docs on Wednesday and the more information I can give HER (thank goodness female) the more chance I have of getting answers?
Or possibly not ... staying positive is a struggle right now despite my user name! It's horrible really a crazy array of seemingly unconnected symptoms with an overwhelming feeling of letting everybody in my beautiful family down.
Sending best wishes to you all ...
Kindly :D
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Re: Is this Fibro?

Postby Jud.smiles » Sun Sep 27, 2015 5:59 pm

Hi Susan & Sarahjboss
Thank goodness I decided to join this forum eventually Im scared out of my whits right now and really dont want to meltdown in front of the family...its helpful to read other's experiences.
Could you tell me how long your diagnosis took? I understand its almost a process of elimination in order to establish diagnosis? Could anyone please tell me if that is usually the case? I wondered whether others are prescribed the same meds as me? That would suggest that I do have IT The words below have made me rock with tears im ashamed of myself for being so self centered when others are so much worse of than mysef I have love and support and really should be counting my blessings ...

One to show the non believer's
Postby shazq » Thu Jul 23, 2009 4:27 pm

If you were born with healthy genes, you may know me but you don't
understand me, I was diagnosed with fibromyalgia
(FMS) after months, years or even decades of mysterious physical and
emotional problems. Because you didn't know how sick I was, you called me
lazy. I hope by reading this it will give you an understanding into our world.

My life has been turned upside down, i dont really understand it myself,
so i will try my best to explain to you how my body has changed and how
some things that have never affected me before do now.

Below is just a very short view into part of my/our world.

FMS is not the newest fad disease. In fact, it isn't a disease at all.
it is known as chronic rheumatism, myalgia and fibrositis. Unlike diseases
syndromes do not have a known cause, but they do have a specific set
of signs and symptoms which, unfortunately for the patient, take place together.
Rheumatoid arthritis and lupus are also syndromes.

The many physical and emotional problems associated with FMS are not
psychological in origin. This is not an "all in your head" disorder.

Fibromyalgia is a common condition characterized by long-term pain and
tender points in joints, muscles, tendons, and other soft tissues.
Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems,
headaches, numbness in hands and feet, depression the list goes on and on.

I think trauma triggered mine.

My pain- is not caused by inflammation.
I can not work with my pain, it`s not because i dont want to
It`s because i dont know where my pain will be i.e;Today it is in
my shoulder, but tomorrow it may be in my legs or even in my arms/hands.
Sometimes i feel as if it`s my whole body.
My pain is believed to be caused by improper signals sent to the brain,
possibly due to sleep disorders. It is not well understood, but it is real.

My fatigue - I am not merely tired. I am often in a severe state of
exhaustion. I may want to participate in physical activities, but I can't.
Please do not take this personally,
it isn't because I don't want to. I am, most likely, paying the price for stressing
my muscles beyond their capability.

My forgetfulness - Those of us who suffer from it call it fibrofog. I may
not remember your name, but I do remember you. I may not remember what I
promised to do for you, even though you told me just seconds ago. My problem
has nothing to do with my age but may be related to sleep deprivation. I do
not have a selective memory. On some days, I just don't have any short-term
memory at all.

My sensitivities - I just can't stand it! "It" could be any number of
things: bright sunlight, loud or high-pitched noises, odors. FMS has been
called the "aggravating everything disorder." So don't make me open the
curtains or listen to your child scream. I really can't stand it.
this gets very frustrating, noises that have never bothered me before
do now.

My intolerance - I can't stand heat, either. Or humidity. If I am a man,
I sweat...profusely. If I am a lady, I perspire. Both are equally
embarrassing, so please don't feel compelled to point this shortcoming out
to me. I know. And don't be surprised if I shake uncontrollably when it's
cold. I don't tolerate cold, either. My internal thermostat is broken, and
nobody knows how to fix it.

My depression - Yes, there are days when I would rather stay in bed
or in the house or even want to die.pain can cause depression.
Your sincere concern and understanding can pull me back from the brink,
yet snide remarks can tip me over the edge.
I will improve, i dont know when, it might be something little that
will bring me out of it. Its not your fault and its not mine.

My sleepless nights - Don't be put of by the looks of me in the morning, i might look
like a zombie, this is because i have not had much sleep, my brain wont
switch off, i have 100 and 1 things going around and around in my head,
none of it makes since, i used to sleep 8 hours a night, now i am lucky if
i sleep for 2 hours at a time.

Sleepy days- Some days i feel so tired, my body weights a ton, my whole
body aches, i have no energy, even though i have been in bed all night i
am going to have to go back to bed again, please understand how i feel,
i don't want to live my life in bed, it is not my choice, the choice has been
taken away from me.

My stress - My body does not handle stress well. If I have to give up my
job, work part time, or handle my responsibilities from home, I'm not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.
My hands go numb and i drop things, i don't seem to know how to control my
own body, this is not a good feeling.

My weight - I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appetite is broken, and nobody can tell
me how to fix it, if only there could be that magic pill. I dont like my body
like this and i cant help the fact that i crave food all the time, i try my best
but my best is not always good enough.

My good days - If you see me smiling and functioning normally, don't
assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks. In fact, the good
days are what keep me going.I try to do what i can as i never know when
the next flare will return.

My medication- I have had to try many different medications, i seem to be
very sensitive, not sure why. Please bare with me if i seem ratty the meds
cause all types of symptoms, ie: sickness, headaches, drowsy, legs/arm pains.
Some meds can take up to 4 weeks to kick in but it only takes a few days
for the side effects to kick in.

Cravings- Please dont think i am being greedy, its not my fault its the side
effects of my meds. I try to resist but sometimes it gives me pleasure to
eat that chocolate bar in the fridge, i try to have more control over the
cravings and to eat healthy snacks but you always see me with the chocolate
bar.

Clumsy- I know there are days when you think i am clumsy, i really dont
mean to be, i know i drop things but it does not give me pleasure doing it,
My hands dont want to grip things, all the strength has gone, wish i knew where.
My legs feel like they have been set in concrete and i have to drag my legs.


Lunch- Peeling veg is getting impossible as i cant grip the knife, this might seem
a small thing to you but its a big thing to me. I want to prepare the
dinner for you all, i am not getting out of it, its the pain stopping me.
I might blame the onion for the tears running down my face but i dont
like to keep showing you my weaknesses, i feel useless.

This heat- is killing me, i cant cope with it, i know i used to be a sun
worshiper but now my thermostat is broke i cant control my temperature.
Dont keep telling me to wipe the sweat from my face, i know its there
do you think i like people looking at me.
the fatigue is so bad all i want to do is sleep but it`s so hot so i need the fan
on me all night, sorry if this bugs you, i dont do it to annoy you.

This cold weather- is really getting to me, i cant seem to get warm
my bones really hurt today, that might sound strange to you, but its
real to me. My fingers and toes hurt with pins and needles, oh why
is all this happening to me.

IBS-bloats me and makes me feel sick,no 2 days are the same one day
i might be constipated and in bad pain but the next i might be on the
loo 5 times. I cant help that i have had to change my eating habits,i
have to learn what is best for my stomach to handle.


Even those who suffer from FMS are not alike.
I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else, we all
have different pain levels. A lot of the same symptoms yes
but also some different.


I hope this helps the non believer`s to understand just a little of what we
Go through on a day to day basis.

Hope i have not board you with this long post.
Thanks for reading.
Written by Shazq.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
MODERATOR

Posts: 11455
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home., y self pity
One to show the non believer's
Postby shazq » Thu Jul 23, 2009 4:27 pm
If you were born with healthy genes, you may know me but you don't
understand me, I was diagnosed with fibromyalgia
(FMS) after months, years or even decades of mysterious physical and
emotional problems. Because you didn't know how sick I was, you called me
lazy. I hope by reading this it will give you an understanding into our world.

My life has been turned upside down, i dont really understand it myself,
so i will try my best to explain to you how my body has changed and how
some things that have never affected me before do now.

Below is just a very short view into part of my/our world.

FMS is not the newest fad disease. In fact, it isn't a disease at all.
it is known as chronic rheumatism, myalgia and fibrositis. Unlike diseases
syndromes do not have a known cause, but they do have a specific set
of signs and symptoms which, unfortunately for the patient, take place together.
Rheumatoid arthritis and lupus are also syndromes.

The many physical and emotional problems associated with FMS are not
psychological in origin. This is not an "all in your head" disorder.

Fibromyalgia is a common condition characterized by long-term pain and
tender points in joints, muscles, tendons, and other soft tissues.
Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems,
headaches, numbness in hands and feet, depression the list goes on and on.

I think trauma triggered mine.

My pain- is not caused by inflammation.
I can not work with my pain, it`s not because i dont want to
It`s because i dont know where my pain will be i.e;Today it is in
my shoulder, but tomorrow it may be in my legs or even in my arms/hands.
Sometimes i feel as if it`s my whole body.
My pain is believed to be caused by improper signals sent to the brain,
possibly due to sleep disorders. It is not well understood, but it is real.

My fatigue - I am not merely tired. I am often in a severe state of
exhaustion. I may want to participate in physical activities, but I can't.
Please do not take this personally,
it isn't because I don't want to. I am, most likely, paying the price for stressing
my muscles beyond their capability.

My forgetfulness - Those of us who suffer from it call it fibrofog. I may
not remember your name, but I do remember you. I may not remember what I
promised to do for you, even though you told me just seconds ago. My problem
has nothing to do with my age but may be related to sleep deprivation. I do
not have a selective memory. On some days, I just don't have any short-term
memory at all.

My sensitivities - I just can't stand it! "It" could be any number of
things: bright sunlight, loud or high-pitched noises, odors. FMS has been
called the "aggravating everything disorder." So don't make me open the
curtains or listen to your child scream. I really can't stand it.
this gets very frustrating, noises that have never bothered me before
do now.

My intolerance - I can't stand heat, either. Or humidity. If I am a man,
I sweat...profusely. If I am a lady, I perspire. Both are equally
embarrassing, so please don't feel compelled to point this shortcoming out
to me. I know. And don't be surprised if I shake uncontrollably when it's
cold. I don't tolerate cold, either. My internal thermostat is broken, and
nobody knows how to fix it.

My depression - Yes, there are days when I would rather stay in bed
or in the house or even want to die.pain can cause depression.
Your sincere concern and understanding can pull me back from the brink,
yet snide remarks can tip me over the edge.
I will improve, i dont know when, it might be something little that
will bring me out of it. Its not your fault and its not mine.

My sleepless nights - Don't be put of by the looks of me in the morning, i might look
like a zombie, this is because i have not had much sleep, my brain wont
switch off, i have 100 and 1 things going around and around in my head,
none of it makes since, i used to sleep 8 hours a night, now i am lucky if
i sleep for 2 hours at a time.

Sleepy days- Some days i feel so tired, my body weights a ton, my whole
body aches, i have no energy, even though i have been in bed all night i
am going to have to go back to bed again, please understand how i feel,
i don't want to live my life in bed, it is not my choice, the choice has been
taken away from me.

My stress - My body does not handle stress well. If I have to give up my
job, work part time, or handle my responsibilities from home, I'm not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.
My hands go numb and i drop things, i don't seem to know how to control my
own body, this is not a good feeling.

My weight - I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appetite is broken, and nobody can tell
me how to fix it, if only there could be that magic pill. I dont like my body
like this and i cant help the fact that i crave food all the time, i try my best
but my best is not always good enough.

My good days - If you see me smiling and functioning normally, don't
assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks. In fact, the good
days are what keep me going.I try to do what i can as i never know when
the next flare will return.

My medication- I have had to try many different medications, i seem to be
very sensitive, not sure why. Please bare with me if i seem ratty the meds
cause all types of symptoms, ie: sickness, headaches, drowsy, legs/arm pains.
Some meds can take up to 4 weeks to kick in but it only takes a few days
for the side effects to kick in.

Cravings- Please dont think i am being greedy, its not my fault its the side
effects of my meds. I try to resist but sometimes it gives me pleasure to
eat that chocolate bar in the fridge, i try to have more control over the
cravings and to eat healthy snacks but you always see me with the chocolate
bar.

Clumsy- I know there are days when you think i am clumsy, i really dont
mean to be, i know i drop things but it does not give me pleasure doing it,
My hands dont want to grip things, all the strength has gone, wish i knew where.
My legs feel like they have been set in concrete and i have to drag my legs.


Lunch- Peeling veg is getting impossible as i cant grip the knife, this might seem
a small thing to you but its a big thing to me. I want to prepare the
dinner for you all, i am not getting out of it, its the pain stopping me.
I might blame the onion for the tears running down my face but i dont
like to keep showing you my weaknesses, i feel useless.

This heat- is killing me, i cant cope with it, i know i used to be a sun
worshiper but now my thermostat is broke i cant control my temperature.
Dont keep telling me to wipe the sweat from my face, i know its there
do you think i like people looking at me.
the fatigue is so bad all i want to do is sleep but it`s so hot so i need the fan
on me all night, sorry if this bugs you, i dont do it to annoy you.

This cold weather- is really getting to me, i cant seem to get warm
my bones really hurt today, that might sound strange to you, but its
real to me. My fingers and toes hurt with pins and needles, oh why
is all this happening to me.

IBS-bloats me and makes me feel sick,no 2 days are the same one day
i might be constipated and in bad pain but the next i might be on the
loo 5 times. I cant help that i have had to change my eating habits,i
have to learn what is best for my stomach to handle.


Even those who suffer from FMS are not alike.
I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else, we all
have different pain levels. A lot of the same symptoms yes
but also some different.


I hope this helps the non believer`s to understand just a little of what we
Go through on a day to day basis.

Hope i have not board you with this long post.
Thanks for reading.
Written by Shazq.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
MODERATOR

Posts: 11455
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.
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Re: Is this Fibro?

Postby Jud.smiles » Thu Oct 01, 2015 3:45 pm

Hi again Padster
How are you doing today? I'm sorry I think I hijacked your post by patting that massive quote on...I'm new to forum etiquette and didn't realise at the time.
I hope you have more joy with your doc than I did yesterday! I waited for a week to get an appointment and I was determined to put a name to IT...have you had any luck with that? Can I swim she asked me? Frustrating stuff.
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Re: Is this Fibro?

Postby Jo90 » Fri Oct 02, 2015 10:40 am

This 'long post' made me cry. It's so frustrating being a fibro sufferer and this sums up all the worst bits, ie, appearing lazy, depression due to loss of your old life etc.
I was actually diagnosed with Peripheral neuropathy but I consider myself a fibro sufferer because I have all the symptoms described in this post.
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Re: Is this Fibro?

Postby Padster » Fri Oct 02, 2015 11:06 am

Hi Jud.smiles - no problem! I'm doing okay, thanks.

I've been so lucky with my GP (as posted above on 24th September). I think it might be because she's quite young? I've read that as Fibro is a "new" conditions, GPs over the age of 40 won't have learned about it at med school. With mine, I just took in a list of all the symptoms I had (varied and random, everything I could think of), my GP took one look at it and said I'm pretty sure you've got Fibromyalgia, but let's just run all the usual tests to rule out anything else. The tests did rule out anything else, except some low immunoglobulin levels and I've got a referral to an immunologist for that.

Had a minor victory last night - managed to stay awake until about 10.30pm!!! For the past few months, I've been crashing out around no later than 9.30pm and asleep before hubby comes to bed, but last night I was still able to function until later - Yay for small victories!!

Pains are still roaming around and the meds aren't helping but hey ho!

Hope you get some joy - maybe try and find a younger doctor who will have learned about fibro when training. I read on a FM facebook page yesterday, that Fibromyalgia has finally been recognised as an official diagnosis in the US so hopefully it will start to become more well known in the UK soon. Maybe direct your GP to this:

http://nationalpainreport.com/the-health-care-industry-finally-recognizes-fibromyalgia-8827637.html

Good luck x
In a perfect world, every dog would have a home and every home would have a dog
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Joined: Wed Sep 02, 2015 10:45 am


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