Hi everyone im new to this forum

[andyajw]

Hi Everybody , I would like to ask you all if you could help me out . I suspect as does my wife that I may have this horrible illness Fibromyalgia .
My symptoms are complete body pain from top to bottom . I am a builder which I put a lot of my aches and pains to but there is obviously an under lying problem as well . My shoulders neck and back are probably the worst area on my body that seems to suffer . I haven`t gone back to work yet since Christmas as I have had such bad pains all over . Other parts of my body that hurt are my wrists I get shooting pains in my fingers and shooting pains between my elbows and wrists . My ankles get painful and if I kneel down and I'm on my knees my toes cramp up .
Headaches come and go as do stomach pains . These don`t happen an awful lot but they occur . I also get very stressed about life and especially my work . I have looked at sights and these symptoms sound like there is some way to saying it could be this illness . Ive spoken to my doctor and I intend to go back this coming week . The worst part of the day is the evening where I completely freeze up and have to sit there with at least 2-3 hot water bottles to get me going again . I'm not 50 till June but I am determined to help myself so I need the help of all of you to tell me what you think .
Kind Regards
Andy

 

[Lou38]

Hi Andy. Welcome to the forum. Unfortunately fibro can take months or even years to diagnose as it’s usually a process of elimination to rule out other possible causes. The only test for fibro is the tender points test but even this is not conclusive of a fibro diagnosis. Many of us have loads of different fibro symptoms where others may only have some. It’s such an unpredictable illness & often there is no rhyme or reason as to how it attacks our bodies. I really hope you get a diagnosis one way or another soon, it’s hard to hear being diagnosed but it’s also really difficult not knowing what you’re dealing with and living your life limbo.

 

[Mandylane]

Hi Andy, I'm new to this forum too. Your post stood out to me because I have similar symptoms to yours. I was diagnosed just a few months ago with fibromyalgia. It took me years for a diagnosis, and years and years of tests. I'm almost 33 and I've been dealing with ever increasing chronic pain for almost 6 years now.

I too have pains in my hands, elbows, and knees and toes. It's shooting pain. In between my fingers and toes are the worst. Tonight I'm dealing with a headache which I don't get often and pain so bad in my neck and back that any pressure intensifies it. Usually this means I will be ten times worse tomorrow morning. Makes you feel like you're 90 trying to get your stiff achy body out of bed.

Just want to say hang in there. I know it seems horrible when one is at their worst with this illness, but I look forward to my good days. Also regular exercise I found keeps the fibro flares less frequent. I go for a lot of hikes in the summer. The cold months make it worse.

 

[vickythecat]

Sadly, as you will read many times on this forum, it can take years for a diagnosis. Sometimes, if you are a smart patient and have a good doctor, it can take months.

Mine was unofficially diagnosed at age 19, but when I moved away and was seeing a different GP at each visit, all my complaints - the life stopping - serious complaints were all dismissed as 'temporary', 'stress related'. Each time I'd hear them say;

'you should go to a spa'
'you should go on a nice holiday and relax'
'you should see a therapist, it can be depression'
'why don't you try to exercise some?'
'massages will help you'
'why don't you take some time off from work'
'why don't you try yoga and meditation'......

But what these doctors never seem to realize that I am not an idiot and that I had tried all of these stuff, for many years in fact. Like hello, I can barely get out of bed, I can't even go to work and you are telling me I should take some time off, go on a holiday, a spa, exercise????

So lessons I've learned and will give to anyone who is at the start of their fibro (or any other illness) diagnosis journey;

- be a smart patient (write down your complaints, keep a diary, analyze how the pain/fatigue is affecting your life, what can't you do no more?, when did it start, when does it get worse etc.)

- listen to your body, if you know there is something wrong, there is something wrong. Believe me, even if all the tests come back perfect, if your body and intuition is telling you there is something wrong, continue to find a doctor who will listen to you.

- before a doctor's visit prepare yourself for the worst. So be ready to 'fight back'. If they dismiss your pain, remind them that you cannot work because of the pain. That you can't do basic household tasks etc. That you can't sleep. Maybe bring your wife along, so she can 'testify' on your behalf as well.

I went to the doctor after 4 years this week, I had been preparing weeks for this appointment. Before that for years I'd come out of such a visit feeling confused, depressed and disappointed, now I came out, feeling stronger. I could see (thanks to my endless research on many areas) that doctors are not all that educated as we assume them to be.

She told me fibromyalgia is caused by a glitch in the brain and that a massage would help cure me (!!!). I had to tell her 'no that is just one of the well-known theories, some researchers are convinced it is an auto-immune illness. Others think it is caused by weak fascia, some think it is the nerves being overactive, not necessarily the brain etc.). To assume that a massage can cure me.....wow, she should get the Nobel price for that suggestion.

But many doctors are like her. I don't want to dismiss her or doctors, I have respect for them, (for everyone) but sadly, many doctors do not do enough research, don't have an open mind, are more worried about making money and are taught to write a patient a list of medications (I got 5 different meds for a simple bladder infection from this doctor- hello???) instead of really looking at what is happening.

- if you are not happy with one doctor, if you can, go to another. Until you find the person who will take you seriously. Now, what you have may not be fibromyalgia, there are many illnesses that have the same symptoms, so it can take a while, but it is important to find a doctor who is willing to really help you until you find out what is actually happening with your body.

In the meantime, take real good care of yourself;
- Eat healthy foods (minimize animal products, processed foods, salt, sugar), eat more veggies and fruits, drink lots of water, take a multivitamin (just in case).
- Try to walk outside, even if it is for 5-10 minutes whenever you can. Being outside helps me tremendously. You might feel exhausted afterwards, but know that is ok. Don't let that stop you from moving all together.

- And learn to pace yourself - the most difficult in life. Accepting your new limits also means that you need to mourn your old life. This is the toughest part of living with pain and exhaustion for me. You will feel down and anxious, so please try to get some help for that too. Talk to people on forums, talk to your loved ones, and do everything to distract yourself from those dark thoughts and feelings. Do things you love - listen to music, watch movies, spend time with your family/pets, find a new hobby etc.

Being a patient needs a lot of patience...wish you all the best.