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Fibromyalgia Action UK

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Fibromyalgia suspicions

marinaoeo profile image
marinaoeo

I am suspecting I may be suffering from fibromyalgia because all my tests are normal & I follow a very healthy lifestyle (weekly exercise, good nutrition, good amount of sleep, good hydration, no bad habits etc etc ) but somehow I have been fatigued for the last 5 years or so! I am so tired I cant even communicate properly with the people around me and can’t remember a day where I last woke up and felt like I can seize the day. One day I read about fibromyalgia and it all sounded totally like me. I really need help to put an end on this condition and if fibromya Is my case I want to hope there is a cure. Can someone tell me where do I start to get diagnosed and what should I expect?

13 Replies

Hi Marinaoeo

I am just beginning to be tested for My symptoms. I have suffered very bad pains in my ankles, legs and hips since i was a child - it feels as though my bones have been deep frozen and placed back in my body. I ache nearly everyday but have the frozen pains about 3/4 times a week.

I also have an extremely stiff ankle and its quite difficult to walk on, when it begins to loosen slightly its more uncomfortable. I also have skin sensitivity on my hip, thigh and right arm on occasion and have really bad pain in my shoulders which makes me tense up and makes the pain even more uncomfortable!

GPs dont get the time to do thorough examinations or listen to us so i just stopped going

Things have gotten worse and ive been to see a GP earlier this year, who said that he wanted to test my blood for a Vitamin D deficiency as this can have an impact in bones and pains - i was severely depleted but im Up in the normal range now and so approx 8 weeks ago saw the GP who said my ankle was just sprained! Ive seen another last week and mentioned Polymyalgia & Fibro and so hes ordered blood tests to test for inflammation markers. Theyve had the results and have asked me to rebook to be retested in a few weeks.

So id say dont stall like i have, go and see them and dont let yourself be fobbed off if you know somethings wrong.

Good luck ! x

Lakewolf profile image
Lakewolf in reply to Misslovely

I agree. Don’t allow them to pontificate on “ ifs”. If they don’t know what’s wrong, demand to be seen by someone who does.

I have a connective tissue disorder, & what you describe is exactly what I’ve gone through. Some days I feel like the Tin Man in the Wizard of Oz.

Unfortunately, there is no cure. It sounds like you may have Chronic Fatigue Syndrome, many of whose symptoms overlap with fibromyalgia.

You’ll need to see a rheumatologist to check out exactly where your problem lies. Blood tests for inflammatory markers may be indicated, as well as a thorough physical exam.

I wish you all the best. Let me know what happens, ok?

Fibromyalgia isn't just fatigue, it's feeling pain around the body in specific places. It can also feel like your skin is burnt and hypersensitive. I used to feel what I called " the electric cattle prod" where out of the blue there would be an incredible sharp stabbing pain and you wouldn't be able to help shouting out when it hit. Some days I can't lift my arm or turn my head. The list goes on. A rheumatologist can diagnose it. You could have CFS which I was diagnosed with first then fibromyalgia not long after. Ask for a rhumatology appointment

Good luck. Deb

Hidden profile image
Hidden in reply to GrandmaDylan

I agree, there are so many different illnesses with similar problems. ask to be referred to a rheumatologist.

Rheumatology is the best place to get referred to.

Most GP's do not have the time and patience it takes to diagnose Fibromyalgia.

Colleagues on here are quite correct in saying that Fibromyalgia is not just Chronic fatigue there is a lot more with Fibromyalgia.

Persistent Chronic pain, sleep disorder memory loss (Fibro fog) pins and needles this list goes on and on.

Hope you get the help you require.

Good luck

Reply

One of the things how rheumatologist diagnosed me was pressure points he lightly pressed on my body that felt like he had punched me. I wish mine was just being extremely tired as that would explain why I don't sleep properly but isn't. I do have CFS too and am in agony with fog brain etc etc and I get worse not better as I age. Ask for blood tests and the pressure test

Thanks everyone for your replies, although I got more confused! The only reason I am not certain that it’s chronic fatigue and think its fibromyalgia is because I don’t have exactly the pain described but I do get incredibly sore on my neck, back, shoulders and waist and often my bones and joints at these point are actually in pain that makes me wanna move and crack them all the time! I also have a headache that is always spotted on the same side of my head like a migraine, which comes and goes but never changes. So I was thinking maybe I suffer from a form of fibromyalgia and not just chronic fatigue. I have all the rest of symptoms listed: Fatigue, Sleep problems, Concentration and memory problems (ie "fibro fog"), Anxiety & depression, Morning stiffness, restless legs, Headaches, Irritable bowel syndrome, Painful menstrual cramps and pms. Any extra thoughts and help here?

What tests have you had done that were normal ? Often a GP will say normal when they mean in range - but it is where you are in the range that is key to your well being.

Have you had your B12 - Folate - Ferritin - VitD tested ? These are not routinely tested and need to be requested. B12 is good above 500 - Folate and Ferritin mid-range and VitD 100 +

Its a good idea to always obtain your test results with ranges so you can monitor your own health and check what has been missed. You are legally entitled to have copies without charge. Many surgeries have records on-line so worth enquiring ...

Thyroid levels ? - how were they ? Fatigue can be a symptom - also the pains.

Marz thanks for pointing out these specific tests. Yes I ve had all of them done and everything is completely l normal except the ferritin levels that are just slightly bellow limit (levels are 11 in a range of 13-150 as normal) I can’t imagine just that being the cause of all my problems because I am already doing a treatment with folic acid and iron for 1+half months and I haven’t seen the slightest improvement in my health, some days I even feel worse!

Do you have all over body pain? You dont mention any pain. Fibro is characterised by all over body pain for at least 3-6 months ,also fatigue, poor sleep,other symptoms. If you 'only' have the fatigue side of things perhaps you have M.E instead?

marinaoeo profile image
marinaoeo in reply to ruthmel1

Hi Ruthmel! The pain is not very clear, its soreness and stiffness that causes some pain in my bones and makes me want to crack myself all the time. All the other symptoms are very clear, its not just fatigue, its the whole list: Sleep problems, Concentration and memory problems (ie "fibro fog"), Anxiety & depression, Morning stiffness, restless legs, Headaches, Irritable bowel syndrome, Painful menstrual cramps and pms. By the way what is M.E?

I have just been diagnosed with fibromyalgia, I saw lots of doctors at my surgery and was really struggling having been off work sick since mid January. My main symptoms at the beginning were chest problems, I have very bad asthma and it was blamed on that, I saw my chest onsultant who said it wasn't asthma and needed investigating further. During this time I felt like I had flu, no energy aching bones and muscles.finally I was seen by a doctor who knows me well and she was concerned by the state of me, my chest consultant to has asked if they had investigated fibromyalgia so I asked her, she referred me to a rheumatologist I had a long wait for an appointment so decided to go privately which I did a couple of weeks ago, he was lovely and diagnosed me with fibromyalgia. He is doing lots more tests, bloods X-rays and scans (which he has had done on the NHS for me) to see if I have any other arthritis or not. I have a NHS appointment in September but if the results come back sooner I shall have a private follow up.

I have never been so uncomfortable my joints are so painful even my jaw hurts a lot of the time, I feel tired and am not refreshed by A good night sleep. I'm hoping things will improve but I am realistic that I will never be free of fibromyalgia. I fall over and get really confused. My husband has some strange conversations with me as I forget what I'm talking about and often use the wrong words.

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