Fibromyalgia- I’ve been diagnosed - Fibromyalgia Acti...

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Fibromyalgia- I’ve been diagnosed

Zosia91 profile image
7 Replies

Hello,

I’m new to this site...

I’ve recently been diagnosed with Fibromyalgia, I’m 28 feeling 80! I just wanted to know how it effects others as I’ve had years of health problems, scans, tests and operations. From a young age I had problems but they really started from when I was 15 years old. I’ve got a few health problems which I won’t go into (unless you want to find out) and I’ve had some random health problems pop up, some of which I’ve had to have surgery for. I’m looking to find out more on Fibromyalgia, the consultant I saw seems to think I’ve had this from a young age from my history. Do any of you suffer with bladder problems, for example UTIs/bladder infections, blood in urine when your bladder is playing up? The list goes on with the symptoms I have, but particularly keen to know if anyone suffers with their bladder? And infections? The other main thing to mention is the headaches as well, do you find you suffer with them a lot? I’ve always had them on and off but since 20th July 2019 to date I’ve had a headache some days are better than others, sometimes it just feels like it’s lurking like it’s on the edge of being a headache. (Sorry it’s hard to explain) I’m booked for a MRI head scan on 15th Feb....Thank you! Sorry to be so forward, not looking for sympathy, just fed up and at a loose end. Also apologies for the long post!!!

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Zosia91
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7 Replies
Willo123 profile image
Willo123

Hi Zosia91,

I’ve recently been diagnosed with fibromyalgia and have suffered for as long as I can remember with uti/bladder infections, they really get me down. I’m on daily medication for it but it doesn’t always work😪

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi Zosia91 and a warm welcome to our community where you will find information, friendship, support and laughter too. You can find more general information about fibromyalgia at fmauk.org

Some people find that they suffer from irritable /sensitive bladder - although I would consider actual uti's/blood in urine a co-morbid condition rather than a symptom

Headaches are common in fibromyalgia and can range from a mild ache to migraines.

Fibromyalgia can affect any age, so yes it is possible that you have had the condition since you were younger xxx

Midori profile image
Midori

Hi Zosia,

Firstly, don't worry about the MRI. They are noisy, but the operator can play music (of your choice, usually) while it's going on.

I understand about the length of time you may have had it; I can trace mine back to age 11. I'm now a few days short of 72, and I feel old enough to have changed dinosaur's nappies!

Welcome to the club nobody want's to join!

Cheers, Midori

Singeranne profile image
Singeranne

You are right to post how you feel. A problem shared is a problem halved. We all can empathise because we all have similar pains and worries.

I am 75 and was only diagnosed 3 years ago. However, I have had pains, sweats and many other symptoms for years. I would say I have had fibro for 20 years at least. I am so pleased that I was diagnosed. At least people do not say that I am lazy. I now feel understood. My husband helps me more than I could ever imagine and can always see when I need him to take over.

Please go and tell your doctor if you still have blood in your wee. It may only be a common infection that needs antibiotics.

X

Kazhew46 profile image
Kazhew46

Hiya,

Sorry to hear you have fibro, I've lived with it for about 9 years now and it basically takes over my life especially when I get a big flare up, going through one right now and it's awful, headaches are a part of fibro unfortunately I have them most days but some very minor but then others almost like a migraine, I don't have bladder issues but do have ibs which I've had since I was 17, although I had sepsis which started off with a bladder infection :-( because I left it and thought it had gone away! My gp seems to think the sepsis triggered off fibro as it's caused by trauma. So never leave a bladder infection

Pbyllis profile image
Pbyllis

Hi I have headaches all the time very rare I get a day with none .

Roselil profile image
Roselil

So sorry dear to hear all this. How I understand. I am in my 80's now and can tell you that I certainly feel it! Nothing really has improved through all the years, since I took an oral polio vaccine as a schoolgirl. Yes, I have had frequent bladder troubles. Either cystitis, or thrush, or bacterial vaginitis. For cystitis, I found that drinking corn silk as a tea has always helped this, but having to take drugs for all the rest. I am sure that we also have irritable bladder as well as irritable bowel, for it hardly seems ever settled at all. I was diagnosed with M.E and later Fibromyalgia, in Jan.1990, when I also needed a wheelchair, but with many add-ons since then. Hope you get some help soon. Love from Roselil

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