Fibromyalgia Action UK
39,256 members51,390 posts

Needing help

Hi everyone,

Sorry to pester again but I a only just getting my head around this fibro 'thing' I have.

Yesterday when I woke I felt so ill everywhere, and the pain in my right shoulder was almost unbearable. I then looked in the mirror and my face was very swollen and my eyes had taken on the appearance of a toad. I just didn't know what to do with myself other than sit really still. I was also desperately thirsty and drank water for England.

The itching then started and became worse and worse over the day.

Would the above be classed as a flare up as I don't believe I have suffered one of these yet.

I was only fully diagnosed in March with Fibro, and I am in a whirl about it all.

Please, can anyone help me out there. I am sure someone has the answer.

Many many thanks to you all, and I hope you have a peaceful day.

Sue x

24 Replies
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Hi sue

This is the first I've heard about these symptoms I've only had my feet swollen up. Are you allergic to anything sounds like a reaction to something . ? How was you diagnosed and how did they test you ?

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Hi,

I was seen by a Rhumatoidologist and my GP. Definitely have Fibro. Don't think it is an allergic reaction, not been anywhere different and not eaten differently.

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same as louise, i think it's either a flare up or you are allergic to something, get yourself to your gp asap please. it could be either but i'm not a doctor so i don't know. x

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Thanks for your reply. Because there was terrific itching as well I thought it was fibro as I have read about it on the forums. Thanks for advice anyway.

Sue x

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no problem, i'll advise as much as i can but nothing can replace seeing your gp or failing that go to a walk in or a+e. if in doubt check it out is what my doctor told me. x

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Thanks for your response. So quick. I think the fact of the matter is, is that I don't know what a flare up is in terms of fibromyalgia. I know the pain in my neck is Fibro, and the itching, but my face - not sure. My face seems a little better today, so will give it the day and then go to the Docs if no better tomorrow. Thank you so much for trying to help me. This syndrome we all ha e is just so frustrating as it has many guises. Hope your day is calm, and painfree. Sue x

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Hi you are not pestering anyone that's what we are all on here for - support - I haven't had swelling with my fibromyalgia but I use to get itching terribly (I use to cry with it) I had to change my diet completely -I now eat no wheat /gluten / minimal dairy and hardly any sugar , no processed foods I haven't had the itchiness again! Well it worked for. Me. hope you feel better soon - Neese x

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You seem to have made a huge jump not to eat all the things in your diet to escape one problem. I have read about whet/gluten before and now may look further into passing that by for me to. Sending you peace and quiet for your day ahead. Sue x

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Yes go to your doc if no improvement . Have you had your thyroid checked aswell because If your thyroid is playing up I read it is can lead to the fibro . I'm looking into the one at the mo because the thyroid controls your immune system too. Which I read if untreated long term can develop into fibro .

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Just had all my bloods done. Thyroid was fine. Vitamin D still not up to where the Doc wants it to be so now on two tablets a day, to help boost it some more. I have bloods taken every two months at the moment.

Thanks for the suggestion though. It all helps.

Sue x

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What were your TSH levels. I'm on vitamin D and calcium too. But also my iron levels are low and prescribed me iron tablets .

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When you saw the specialist what test did he do to diagnose your fibro?

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I had seventeen blood tests to rule things in or out for different problems. The consultant then found 19 points on my body where I was in pain and then many tender points.

Sue

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All my other blood readings were correct except for Vit D which is being addressed.

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That's interesting . So it was touch tests that gave him diagnosis then ..

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Why is it interesting??? There was also reflex tests. I was in significant pain at that time all over my body.

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Hello cattistock2013

I am not a medical professional but have had Fibro for 30 years. Personally I have not heard of the swelling that you have described.

A flare is basically all of the symptoms that each of us experience on a regular basis going into overdrive including excessive pain and fatigue. It just means that everything feels an awful lot worse.

Flares usually, but not always, happen after a period of stress.

Any new symptoms should always be checked over by your GP.

Wishing you less pain and more peace

Lu x

Administrator

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Thanks for your reply. I have started to feel a little better as the day has gone on today, so maybe it was a blip or a re-action =. Cant think as to what though.

Thanks for your kind words and thought.

Sue x

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Hi Sue

I am so glad that you are feeling a little better.

See how you go today.

Fibro takes an awful lot of getting your head around.

Try not to stress about it too much and feel free to ask us absolutely anything you want to.

Between us we have a lot of experience with symptoms etc.

Have you looked on our mother site? You may find some interesting info on there fmauk.org

Please don't hesitate to contact me if I can be of any help or you'd just like a chat.

Take care of yourself.

Lu xx

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Thank you so much. Lovely to know I have a few friends out there. Fibro can be a lonely place. Sue xx

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Hi cattistock2013

I am so genuinely sorry to read that you are experiencing these symptoms but the official line is that Fibro is not an inflammatory illness. I have pasted you below a Google excerpt taken from the *nih.gov website:

*Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles, or other tissues.

It may be best to discuss your swellings with your doctor just to get other medical conditions ruled out of the equation. I want to sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

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Hi, Thanks for your support. The massive amount of blood tests I had done was to make sure there were no inflammatory markers which if there were would have indicated smoothing other than Fibro going on. When examined, I had all the markers they use to identify fibro and then to touch mo at all was excrutiating which I believe they just call tender. Anyway, I am diagnosed and am doing my best to cope and have a wonderful GP who is doing her level best to ease my pain.

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Good luck my friend.

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Hi cattistock, I understand the face swelling you are talking about, I have sjogrens which is an autoimmune illness that attacks any glands it can lay its hands on. Have you had a cold or virus lately? the sjogrens doesnt know when to stop, my Doctor first thought I had Mumps, until the did specific blood tests, its not that well known, there are only two of us in our surgery, which is a big one, sjogrens is closely related to Lupus, the swelling can take quite awhile to go away, anyway, just a thought. Lyzzie. x

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