Ive just been diagnosed after 20yrs plus of symptoms. I had to go down the private route amd was iagnosed by a simple mri within 2wks!
I have a long list of other symptoms that my consultant thinks could be something else.
Ive had these other syptoms for about the last 5 yrs that have gradually got worse.
Inside of Knees hurt when im lying on side
Hip pain & clicky hips,
Chronic fatigue. Started vit d but no help.
Arms feel heavy and lifeless most evenings,like they are being weighed down.
If i have sat in same position, my hips/knees/ankle joins are really stiff and i have to hobble around for ages. In the morning it feels like it takes ages to get going.
So moody and irritable at how tired i am every day. (This could be the endo tho)
Very often i feel like i am zapped of all my energy & just have to lie down.
I bruised very badly from seeing a chiropractor, she stated it was not a very forceul massage at all. It was very painful on hips, lower back & back of shoulders. She was very baffled as to how this could of happened.
Had bloods, apart from vit d deficiancy, i have a slight hormone imbalance
History of depression
Great difficulty sleeping
I cannot do my hair without my arms hurting. Severe ache
Always always cold. Permenent office politics if cold in office. Other people around me are fine
Hair loss since i was 16
I've posted on the fibro page bit no responses.
Do these symptoms ring true to those who have both?
I've read the two can go hand in hand?
Can i demand to see a neurologist? I really am nervous about going back and having to fight. I fought ao many years amd have nothing left!
Thanks
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Dangermouse381
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Fibromyalgia is basically something doctors tell you that you have when they can't make sense of your symptoms. The test they do, poking certain areas and seeing if they're sore, is actually just poking major acupuncture points. All it is showing is that all your body systems have got completely messed up.
Endometriosis messes up your entire body, if messes up your immune system which can cause the body to attack itself (hence joint pains), the hormones will be imbalanced as the endo creates its own form of oestrogen, there's a chemical called IL-6 that the body generates in response the inflammation that has been found in very high levels in women with endo which messes with your cognitive abilities and mental health.
Basically, all your symptoms could be the endo. Are you on any treatment such as Zoladex? If you are then things should start improving a little. But I didn't really start getting better until after the hysterectomy and coming off HRT. Going on a very low carb diet to get rid of candida in the gut also made a big improvement, endo and candida really love each other and they both need oestrogen to grow but also both generate it.
I have only just recently been diagnosed. I took codiene for years but now gives me bad chest pain. I got my op arranged within weeks of diagnosis and its booked for a week today so havent started any form of anything. I think the plan is to fit a merina whilst im under but i also have a prolapsed cervix so im not too sure it sits comfortably with me. Never been to a pain clinic or anything as nhs never picked endo up in over 20yrs.
I suppose then i should wait until everything has settled down after oblation to see where it leaves me.
Praying i will get some relief as its stolen most of my adult life from me basically. X
I was 47 before I was diagnosed (diagnosed myself and then paid to get private diagnosis). I know where you're coming from, most of my adult life was stolen by this condition and I was spelling out symptoms to GPs and gynaes but they didn't join the dots and just told me it was normal period problems and other symptoms (blinding headaches every period, flu like feeling at menstruation and ovulation) were just coincidental or because I was run down and I needed to take better care of myself and eat sensibly (never having asked me anything at all about diet.)
Feel your pain. It's awful isn't it? I feel maybe if I was diagnosed all those years ago, it prehaps wouldn't of stolen my fertility away. I also had an ectopic because tubes were so damaged.
My partners healthcare at work is priceless. Between forst consulation and op booked next week, its been less than 2 months!
Absolutely crazy in comparison to nhs where I would still be in limbo with no diagnosis.
I was diagnosed with fibromyalgia nearly 10 years ago and endo last year.
The problem I have is when I go to the gp with endo pains they will blame the fibromyalgia or the other way round.
A big percentage of fibro patients are women, who say it flares when hormonal, which would start a vicious circle for women with endometriosis as well.
I know the fibromyalgia can never be cured but controlled so I'm hoping I can get something done with endo, which is very hard as most GP's don't understand either conditions
This sounds horribly familiar. My GP referred me to a Rheumatologist who made a diagnosis of Fibromyalgia during my initial consultation with him. This was based on more than the comment re acupuncture points below and I don't accept that it is a coverall solution. Whilst this was only a couple of months ago, it was a relief to know that I wasn't going crazy.
I know I have been lucky, my GP and the Rheumatologist are both brilliant. In combination with the Chronic Pain Clinic, we are working together to develop coping mechanisms, exercise programs and CBT to help me recover my life. Already I am weaning off the morphine and codeine, simply by switching to Duloxetine and am starting to be able to think again. The Rheumatologist took me through a presentation of how the brain works, how it works with Fibromyalgia and how to move forwards.
I'm so sorry to hear you are struggling too. I know how awful it is, but the fact that you are asking questions and talking about this tells me you are a fighter and you will come through this.
I know that at the moment there isn't a cure, but there is life with Endometriosis, Adenomyosis and Fibromyalgia. Thinking of you, sending you gentle hugs and if I can be of any help, just ask.
Sorry to hear you're suffering so much. Selfishly your post has brought me some comfort.
Your symptoms are my symptoms. I was diagnosed with ME for the first time around 11 years old and so many things have been blamed on this over the years - including the endo symptoms until I myself noticed the cyclical nature of them.
I had endo excised from left utero-sacral ligament (they only found one nodule) and a hysterectomy as I had adenomyosis, December last year.
And now... oh my goodness, the pain has been getting worse and worse. My post exertional stuff is the same as ever but this pain is something else! My GP can't decide whether to send me to a neurologist, endocrinologist or a rheumatologist, by her own admission, and is therefore doing nothing.
I suspect fibromyalgia - perhaps it was always there alongside the ME and surgery has exacerbated it.
All of my blood tests are fine (although some only just) - apart from Vitamin D, which was 16 last test, waiting to see whether the pills they gave me have helped raise this any.
Please let me know how you get on and if I have any joy I'll tell you what happens.
I am due my op to rid the endo on saturdat. I think, as somebody has mentioned all my symptoms could be caused by that, I will see what I feel like once settled from the op. In agony today.. my lower back,hips and tops of legs are so sore. My heat pad just won't get hot enough .
Sorry you are going through this too. I will keep you posted x
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