New and Needing Advice

[Kat791]

Hi All,

I am new here. I am 26 years old and was told 2 years ago(in 2022) that I probably have fibromyalgia. I was doing okay then, but now I am in a lot of pain. I was recently told again this year that I probably have fibromyalgia, but I'm still not sure if its true. The first time I was told was by a rheumatologist(NHS), who saw me once for about 10-15 minutes. She didn't really examine me either, just asked a few questions. Then she said I probably had fibromyalgia(because all my blood tests came back normal), gave me a six-page pamphlet about fibromyalgia, told me she was discharging me from rheumatology, and sent me on my way. I never heard anything about it again for the next 2 years. At the time I was suffering from pain in my back, elbows, wrists, and hands.

For the past 7 months I have been in a lot of pain. It started in my feet and pelvis, and has gradually spread to my whole body. I have been in and out of the GPs, and am struggling to get help. In June I finally had an appointment with pain management, which was through Connect Health. During that first appointment, they brought up the fibromyalgia diagnosis which was given two years prior, and said that was probably causing most of my pain. They did some neurological tests on me, like reflex testing and stuff, but other than that they did not do much of an examination either. They have not helped me either, as unbeknownst to me at the time they are a "holistic service"(not proper pain management). This means they do not prescribe anything or do any investigations/treatment. They don't actually offer holistic services either though. They just tell you to do stretches, exercise, yoga, meditation, etc. That's it. To say I'm disappointed would be an understatement.

No one has really fully explained fibromyalgia to me either or how it could be causing different symptoms. So I was hoping maybe I could get some advice here.

If anyone could answer some of these questions for me, that would be wonderful.

1. If you were diagnosed with fibro, how were you diagnosed? Did you actually have tests done and get examined, or did someone just say you had fibro?

2. Can fibromyalgia cause your muscles to become extremely hard and stiff? (I ask this, because my muscles have slowly just been getting stiffer and harder. They are like rocks. I go for walks everyday, and do like 30 minutes of stretching everyday, and they're still just getting stiffer.)

3. Can fibromyalgia cause severe pelvic pain? (i.e. UTI like symptoms, burning, stabbing, painful to just wipe down there)

4. Can fibromyalgia cause burning mouth syndrome?

[Essential247]

Hi

My name is Michelle and I’m 54 years old. I’ve had Fibro for about 10 year or more. Before I was diagnosed I was back and forth like you blood tests, rheumatology checks for years they did not understand Fibro at all. I was so frustrated my life was a nightmare wanting some answers. Then one day I had a routine appointment with another rheumatologist and he was brilliant. He pressed some tender areas ie side knees, elbows and back and it was so painful I could still feel the pain for 20mins. He knew then I had Fibro. There is no cure I went on a course the hospital in the uk did to help with the symptoms and there is booklets on arthritis uk site about Fibro and fatigue it all made sense. So to help me mindfulness app for relaxation techniques good pain control during the day and I take amitryptyline at night for sleeping. I’m 54 still working full time but I’m tired still in pain sometimes. Learn to love yourself worry and stress make it worse so learn to stop and be in tune with your body and put yourself first. Hope this helps.

[2hot]

Hi Kat791, this sounds pretty much like my journey for the past 30 years. I think there are definitive tests in the pipeline but mostly it’s just diagnose from what you say. A mixture of meds helped me live a normal life for 20+ years. I do find yoga and Pilates helpful although you do have to grit your teeth and push through the pain. I also have tight muscles and I have massages to help with this. Again the pain is bad but if you can fight through it it does help. Good luck.

[Fibroguy66]

HelloFibromyalgia will & can cause all the symptoms you mentioned.

It's a terrible thing to live with.

I've had it for over 20+ plus years now.

How on earth can one do yoga or bending exercises when in so much muscle pain etc.

The fibromyalgia test was done by a physical hands on examination i.e. lots of poking & pulling & yes it bl.ody hurt to that I complained etc,but they just white wash over what you tell them anyway.

Having overlapping medical conditions doesn't help like I have,as fibromyalgia makes each & everyone worse.

Kindest Regards

[Cat00]

Hi Kat791My experience is that GPs and hospital doctors are generally not particularly helpful when it comes to most chronic pain conditions, this forum is very good though!

1. I was diagnosed by finding an article about fibromyalgia on the Internet and taking it to the GP and saying "I think I have this" they said "yes", this was over 20 years ago so very few people had heard of it. It was confirmed by Rheumatologist about 10 years later. I had blood tests to rule out other causes of widespread pain which all came back normal.

2. I get stiff muscles which I've always associated with fibro. My cure for this is intense exercise, I get my whole body really warm and all my muscles connected together through movement. I do combat or weights for this but anything that makes you sweat is good. Stretch afterwards, not before, high risk of injury before.

3.I wouldn't have thought fibro itself would give you pelvic pain but certainly the many conditions that are comorbid with fibro can. I have IBS and Bladder Pain Syndrome (also known as Interstitial Cystitis) which can feel like UTI but without an actual identifiable infection.

4. Again not sure about Burning Mouth Syndrome but I have read about it on this site so certainly some fibro patients have it, hopefully they can tell you more.

[CheetieCat]

Hi Kat, added a link you might find helpful

google.com/url?sa=t&source=...