Fibromyalgia Action UK

In a bit of a panic - had other symptoms dismissed as fibro???

I am 27 years old but I have had fibro for a looooooong time so I know my body and I know my spectrum. I recently reported some unusual symptoms and was sent to the hospital.

The Dr (junior) did the old touch your nose touch your toes test and sent me home stating that it was a new symptom (I rarely go to drs/hospital because this tends to be the answer) But I was having problems breathing and had tingling around my mouth and a numbness right down my arm so thought that it would be best to get it checked.

As with everything else I learnt to live with this then I mentioned it to my physio and she has ran some tests - I am running on reduced oxygen because of a problem with the muscles in my diaphragm being restricted hence my 6 week flare up!!! She is starting to reverse this but can't do it too quick as I would overdose on oxygen.

Anyhow, this is one my stories but what really scares me is my eldery aunt - 86 has lived with lupus and fibro all of her life. She started reporting new symptoms the back end of last year and they kept sending her away stating it was the lupus and fibro. She died last week of undiagnosed cancer - I am now scared that this happens to me and up until now I have remained pretty sound of mind bar the odd down day

6 Replies

Oh really i'm sorry to hear your case. If you are still worried asked to be seen by a rheumatologist or neurologist. If we don't fight, we don't get. There are no hard and set facts that FMS is genetical, however there are suggestions through research it could be so for your own peace of mind it is worth having a second opinion.

Do you have any neck injuries ie whiplash?

Do you have panic attacks and suffer from anxiety?? xx


I am really sorry to hear of your sad loss Nicola. Please don't start worrying unecessarily. Anyone can have any condition at any time and nobody should live their life based on what they might get. The best advice I would give is that when you know your body, you know when there is anything different going on with it. If you do recognise any new symptom and it remains consistent for more than 7days, go to your GP and ask for it to be investigated. If your GP is resistant and tries to write it off as an FMS symptom, keep calm, explain that it not a symptom you have ever experienced before. Ask how they can know it is related to your FMS and isn't a symptom of anything else. Then tell them you would be very grateful if the symptom could be investigated as if it wasn't related, to put your mind at rest. There are not many GP's who will refuse that request and in normal circumstances you will get the necessary investigation at that point. However, If they do refuse, tell them you would like their refusal noted in your medical records, that usually will make them think twice. If it doesn't work, go home and write a letter to the Practice Manager at the Surgery explaining what happened, repeating your request that the GP's refusal is noted in your records and requesting an appointment with another GP at the practice, who has a greater understanding of your condition and the effects that the stress from worrying about your symptoms will have upon it. In the meantime, I hope your work with your physio goes well and you are back to YOUR normal soonest.


Sorry to read this. If you are worried that any symptoms you are having are not due to fibro please insist to your doctor that it be checked fully. Share with them your concerns as they can be very supportive at times. My Doctor admitted a few years back that with fibro patients they are always at risk of dismissing new worries. I was having a nasty year of small vessel disease and was later told that I had had a series of small strokes. Lucky for me I have membership of Benendan Healthcare so was able to go private once I'd got him to put me on a waiting list. Persevere until you are satisfied.

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i so so think sometimes if my bone was sticking threw the leg it would be a simptom with fms but most things will be sorted with a blood test .. keep fighting and good luck

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I am sorry to hear about your Aunt. I hope you are coping with her passing and wish you well.

It is a different matter for you, however, you are more able to understand that we don't just accept what the doctor says and leave it at that. She was a different generation to you and you have support and advice available to you here and elsewhere, so if you are concerned you need not be in a similar situation.

The symptoms of FM are varied and confusing; personally I have been told I do have it and I can't possibly have it by so many people it is very confusing. My doctor and I are going to have a talk next week and I am gathering my symptoms and information together first. He is very good and accepted my request for another opinion before so I am sure we can sort this out.

Just keep going and if you don't get a good enough answer, ask someone else.

Take care.

Soft hugs

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Our doctors tend to see us as Fibro patients instead of listening to our symptoms and checking for additional problems. I almost died, had pneumonia and 2 blood clots in my lungs but my family doc only saw another Fibro complaint . The problem is I do not present A-Typical. I did not have a cough, no fever, extreme fatigue but I was helping my daughter. I did have excessive sweating. My primary complaint was pain on my left side from top of ribs almost to my waist. As if someone had hit me with bat . I only went to ER when the pain started coming in waves of excruciating pain and difficulties breathing . My doc now looks at me as a whole person and not every complaint is Fibro related. I also am asking for more tests to rule other things out ! We have to be in charge of our own health .


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