Hi New Member, Crying finding out there is a name for this

[Amy22494]

Hi I am Amy, when I was very young I developed muscle pains aches etc went to my GP they prescribed all kinds of things.

I went through so many doctors.. nurses, pain treatments over 10 years nothing, anyway 20 years later my joint paints just got worse, burning all over my body doctors couldn't figure out what was going on and I find this forum where everyone is explaining what I am going through. Last year I had an emergency C-section and 3 failed epidurals which left me with even more pain.. permenant damage from an epidural administered wrongly, it kept falling out I was so upset but what can you do? anyway I'm writing this because I'm at my widths end with being in agony pretending I can walk without my whole body hurting

After DD was born my body just got worse from trauma
Lost my Daughter whole body just felt like it had shut down on top of the already agonizing pain
I've been diagnosed with slipped disc at L5S1
Burning pains in my arms, legs etc
Pain all over my shoulders, groins, numbness
They kept saying to me just take pain relief no relief was coming
Prescribed morphine and didn't even touch it
THE only time my body feels even slightly out of pain is hot baths... I take like 4-5 a day I don't even care who judges me tf.....

I am in so much pain daily that I feel like taking my f*** life I am so sorry but I'm so fed up with doctors dismissing people. To be honest I have a good doctor generally but I'm just so annoyed that I have done this now 30 years. Feel like I should be using a walking aid but I'm so embarassed..

Feel sometimes I cannot even ask my husband to slow down in supermarket :'( I am so full of shame yet I know my whole body is literally wasting away from pain. I don't know how to approach my doctor about this

I cannot sleep at night from pain
I am in agony now and it's 5am

I feel like getting an actual diagnosis would change my life how do I go about this?
I've just switched to a new GP and I do not know them

 

[Jaclyn]

You're definitely not alone with the pain. There are no solutions as such for fibro - but there are supportive doctors and you may need to do some online research to find any in your neighbourhood. Yes, doctors can be dismissive, which is incredibly unhelpful. The onus is on us to find what works, because a doctor cannot understand in the 10 to 20 minute appointments what to do with symptoms that they cannot understand.

There is no shame in this illness, even though we try to pretend for other people's sake that we're okay. We're not doing ourselves any favours by doing this. There may be pain management clinics in your area? Worth finding out. I'm new to this forum, and have found it interesting to read about others experiences with drugs versus no drugs, foods that we can or can't tolerate, so far, this forum has been the best way to find out more of what might be helpful. Hope your desperation is helped a little by reading about what others find works for them.

 

[sunkacola]

I feel like getting an actual diagnosis would change my life how do I go about this?

Hi Amy,

Welcome to the forum, and I hope this is a place where you can get information and, most of all, support from others who understand what you are going through.

Unfortunately, I am sorry to have to tell you that getting a diagnosis is unlikely to change your life. A diagnosis of fibromyalgia is useful to write on insurance forms, to get referrals, sometimes to get medication, and so on. But it is not life-changing in any way because there is no medication that cures fibromyalgia, and not even a medication or treatment that works well for everyone who has fibro.
That doesn't mean you shouldn't seek out a diagnosis. Just that I would hate to see you pin hopes of a life-change on getting one and then experience that disappointment.

In terms of getting a diagnosis, the usual way to go about it is to be tested first for the various things that cause similar symptoms to fibro, so that they can be ruled out. Often this is done by a rheumatologist, but the same tests can be ordered by any doctor. You just need a doctor who will listen to you and take you seriously, and sometimes that is not easy to find.

 

[Altered life]

It might be more effective if you simply told your doctor you suffer from chronic pain and ask him to refer you to a Chronic Pain Management Program. Then he would have medical reports from people who specialize in chronic pain to go on.

 

[bbbarnard]

To: Altered Life
I’m not a medical professional, but I’m really experienced in the pain and fatigue that comes with Fibromyalgia and Chronic Fatigue Syndrome. I suffered a barrage of symptoms and went to a separate doctor for each one, then I moved to a large city and found a friend who had almost the exact same symptoms. She was so very kind that she immediately called her doctor to make an appointment for me. She did not use the word “Fibromyalgia.” The doctor looked at my list of symptoms, asked me questions about them, then told me that all of my symptoms could be grouped together into one thing, “Fibromyalgia.” I had been going to different types of doctors for 14 years, but he was the first to consider every symptom together, not just what might fit into a specialty. After an examination, he told me that all of it combined was Fibro, I began crying with relief from hearing that it all fit together. As many others have said, we all walk through the Fibro path a little differently; but, we’re still all together in a horrible disease. The list of symptoms is well over 25 different things. Some of us have more symptoms than others; some of us have particular symptoms that are the worst. Finding treatment for everything and taking care of ourselves looks a little different for each of us. But, you’re right, just knowing that this wide range of symptoms, the excruciating pain, and unending fatigue all fit together is a relief.
Please continue to communicate, to take care of yourself. Sometimes family and friends do get tired of hearing about our misery, but it is real. You’re not alone. You’re not crazy. Continue learning all you can from reputable sources. I’m sorry that you hurt, that life and this illness are confusing. I care about you. Continue trying to find what works for you; please know you are not alone. Even when you don’t have the words to describe how bad the pain is, keep trying. If you are in a position in life where you can spend a day or two in bed just to rest, do so without guilt. Take care and please keep talking with those of us who understand.

 

[Altered life]

Thanks to all for your thoughtfulness & support. I can't stay in bed, the pain makes me want to run, like running away from the pain, but I can't jog anymore. So I want to scream out my pain & frustration. But that's not socially acceptable. I have to find ways to distract my mind from the pain. But my mobility is so compromised that anything physical is out of the question.
Tried to take an online course a few weeks ago, I am a lifelong bookworm & love learning new things. The pain level is so high, that it shoots into my brain, and interferes with my ability to process information.
I struggled with the decision to either push myself or try something else. I decided that pushing myself would only cause me stress. That I have 'pushed' myself enough in life.
Decided this course was too demanding for me. In the past, it would have been an exciting challenge. Disappointing, but it's time to learn to be kind to my body & mind.
So decided to fill my world with vibrant colors. Have started Adult Coloring Books Art. Wow! Can't believe how many new types of markers & paints are out there! Many colouring tutorials are available on youtube.
This site helps. When I feel like no one in the world understands how I struggle daily, I know there are people out there who care and understand experientially.

 

[sunkacola]

So I want to scream out my pain & frustration. But that's not socially acceptable.

Have you tried screaming into a pillow? I do that sometimes. I go into another room or outdoors so I don't upset the animals I live with, get a good thick pillow, and let 'er rip into the pillow. You can scream all you like and it hardly makes any sound.

Doesn't help with pain, but it is a kind of release.....

 

[Ian waxman]

Hi I am Amy, when I was very young I developed muscle pains aches etc went to my GP they prescribed all kinds of things.

I went through so many doctors.. nurses, pain treatments over 10 years nothing, anyway 20 years later my joint paints just got worse, burning all over my body doctors couldn't figure out what was going on and I find this forum where everyone is explaining what I am going through. Last year I had an emergency C-section and 3 failed epidurals which left me with even more pain.. permenant damage from an epidural administered wrongly, it kept falling out I was so upset but what can you do? anyway I'm writing this because I'm at my widths end with being in agony pretending I can walk without my whole body hurting

After DD was born my body just got worse from trauma
Lost my Daughter whole body just felt like it had shut down on top of the already agonizing pain
I've been diagnosed with slipped disc at L5S1
Burning pains in my arms, legs etc
Pain all over my shoulders, groins, numbness
They kept saying to me just take pain relief no relief was coming
Prescribed morphine and didn't even touch it
THE only time my body feels even slightly out of pain is hot baths... I take like 4-5 a day I don't even care who judges me tf.....

I am in so much pain daily that I feel like taking my f*** life I am so sorry but I'm so fed up with doctors dismissing people. To be honest I have a good doctor generally but I'm just so annoyed that I have done this now 30 years. Feel like I should be using a walking aid but I'm so embarassed..

Feel sometimes I cannot even ask my husband to slow down in supermarket :'( I am so full of shame yet I know my whole body is literally wasting away from pain. I don't know how to approach my doctor about this

I cannot sleep at night from pain
I am in agony now and it's 5am

I feel like getting an actual diagnosis would change my life how do I go about this?
I've just switched to a new GP and I do not know them

Hi!sorry for the agonising trauma you have been through.nobody can understand just how bad you feel but we on this forum have been through traumas in some form which may or may not have triggered fybro.i personally think that after all the trauma your body has had to endure it could have triggered fybro,it usually takes a trauma to ignite the spark.you cannot keep living your life with this agonising pain which we know all to well.go back to the docs insist you think it’s fybro and you want the right meds to help ease the pain.are you suffering from depression?don’t take no for a answer tell them you feel your life’s not worth living and they will help you.sometimes you have to be forceful.i was and I’ve been in the worst pain imaginable.take comfort from the people on this forum,they’re a fantastic help and we need each other to listen when we’re at our lowest point.be positive and tell yourself that you have fybro and you need meds.if it doesn’t work at least you know.hope this helps.take care xxx

 

[sunkacola]

don’t take no for a answer tell them you feel your life’s not worth living and they will help you.sometimes you have to be forceful

Just a word to the wise............be very, very careful what you say to a doctor about "life not worth living".

If they get the idea that a patient is suicidal it can make things a whole lot worse for that patient.
It can mean that you would be unable to receive pain medication because they'd be afraid that you would overdose. Doctors are very sensitive about this, because they could be sued by a person's family if they prescribe medication to a suicidal patient who then uses it to take their own life.
It can mean that you will not be believed because they will classify you in their minds as mentally ill. And then they will attribute all of your reports about physical pain to your supposed mental illness.
It can mean that this will go on your permanent medical record, and be a permanent barrier to your getting the kind of care you need, and it can possibly even mean, although this last thing is unlikely, getting put into a psych ward.

I think it is always better to explain that you are in pain, but doing everything you can to deal with it and just need some medical help. And/or to say that you are depressed, and know that life is not really as bad as it feels right now, and that you need medication in order to be able to function better so that you can do the things that will help you to feel better.

 

[Ian waxman]

Just a word to the wise............be very, very careful what you say to a doctor about "life not worth living".

If they get the idea that a patient is suicidal it can make things a whole lot worse for that patient.
It can mean that you would be unable to receive pain medication because they'd be afraid that you would overdose. Doctors are very sensitive about this, because they could be sued by a person's family if they prescribe medication to a suicidal patient who then uses it to take their own life.
It can mean that you will not be believed because they will classify you in their minds as mentally ill. And then they will attribute all of your reports about physical pain to your supposed mental illness.
It can mean that this will go on your permanent medical record, and be a permanent barrier to your getting the kind of care you need, and it can possibly even mean, although this last thing is unlikely, getting put into a psych ward.

I think it is always better to explain that you are in pain, but doing everything you can to deal with it and just need some medical help. And/or to say that you are depressed, and know that life is not really as bad as it feels right now, and that you need medication in order to be able to function better so that you can do the things that will help you to feel better.

Yes,sorry,probably saying that life’s not worth living is a bit strong.they can take it that you are suicidal and they will note it.you don’t want it on record or the relevant services notifying.i must admit i have been there more than once and I wouldn’t wish that on anyone.sorry for putting that,wrong words