Fibromyalgia Action UK
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So confused

Hi everyone,

I am new to the group and to be honest not even sure if I should be as not had a formal diagnosis yet.

I know that everything has to be ruled out first, but it is so frustrating. I am a 43 years old and up until recently I was working full time and although life was stressful (my partner has a brain injury) I was coping.

This has knocked me for six. I have seen a rhumatolgist who said that I have clinical evidence of possible fibromyalgia. He wants to rule out everything else first. Think things were confused by the fact I had a response to steroids. Although I still have pain.

I'm struggling with the different pains I get to be honest. The sharp pains are the worst.

I currently have a really sharp pain going down my right arm towards my hand. Usual sore shoulders and hip pains too. Are sharp pains normal?

I am still on steroids and am trying to reduce these, I am also on amytripyliine. Nothing else. I have had bloods and will check tomorrow if results are back. The rheumatologist also suggested X-rays which I've not yet had.

I have tried a lot of things just brought some turmeric to try.

I am sorry for waffling I am just having a day when I'm feeling sorry for myself.

Do I sound like fibro and how do you manage?

I keep telling myself things could be worse but not really sinking in.

Thanks

27 Replies
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when you say you are on steroids-are they oral or injecions?

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Hi I'm on oral. Gp started me on them as a trial as nothing was working and physio thought I had pmr. Rheumatology stared definitely not pmr as way too young . Advised me to wean off them slowly

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Hi

What dose of Steroids did you start at and is the pain bilateral

more younger people are being diagnose with PMR so your Rheum is wrong its not impossible to have it in your 40s .

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Hi at first I was put on 20mg and had a good response. Gp dropped me after a week to 5mg and went back to square one.

The pain is bilateral but always had worse right shoulder and left hip

I am currently on12.5mg but still in pain.

I know the right diagnosis is important but really would like some pain control

Sorry for moaning

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Hi

No your not moaning pain does get you down

If it is PMR 15 mg for a week is not long enough to clear out inflammation you would normally need about 6 weeks then drop to 12.5 some have problems with a drop of that amount and have to do one 1 mg.

Steroids do not have any effect on Fibro pain and no other meds work on PMR pain.

It took me two years to be diagnosed with PMR I was unable to get in or out of bed and unable to care for myself .

I hope you get sorted soon and find out what the problem is

Best Wishes

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Thankyou. I'm not sure if something else is going off to be honest. The rheumatologist said that I had 15 out of 18 tender points so clinical evidence of possible fibro

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I don't think steroids have any effect on fibro, so it sounds as if something else is going on as well, hope you get an answer soon.

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Thankyou. They aren't doing much at the minute but not sure if that's because the dose is lower

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You say you have bought turmeric, better maybe to get the ones with a high content of curcumin which is the active ingredient and is the effective anti inflammatory bit of turmeric . there are many natural anti inflammatory supplements, which can help, also cutting out all sugar, alchohol, maybe grains and caffeine, which are all potentially inflammatory, depending on your system. I am managing to control the pain without any drugs, just using organic everything, cutting out chemicals, changing my way of eating , taking the right supplements for energy and inflammation, going to the gym for light excercise and stretching.. Every so often I stray from this and have a flare up of pain and stiffness, which reminds me to get back on course. I keep trying new products with varying degrees of success, and I go to a chinese doctor for accupunture and herbs which definitely helps. I would say that my pain levels are at about 30-40% from the original levels which make life much more palatable. These are a few ideas to try, hope thats of some use!

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Thankyou . I will look into what you have said. Thinking of trying tai chi

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tai chi is supposed to be good, swimming too. Some of the other things I take are - magnesium, as it helps the muscles relax, magnesium malate in the morning and magnesium bis-glycinate in the evening which helps you sleep, also vitamins D3 and K2 along with the magnesium in the evening as they seem to aid good sleep.cheers

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Hi Scrumbly. It must be stressful to have to take time off work. I am 44. I saw my private Rheumatologist in October 2015. I am not really any closer to a definate diagnosis. I have shoulder, hip, lower back, ankle, knee and wrist problems. The neck is the worst. My loose diagnosis is "undifferentiated inflammatory polyarthritis." Great.

Been on lots of different anti inflammatories, and a Plaquenil and Sulphasalazine. Plaquenil and Prednisone worked great. I ended up allergic to Plaquenil and Prednisone is not a permanent thing.

After having a reaction to Sulphasalazine I had to stop that too. My neck got really sore and I had a huge headache, sore eyes, vertigo, dizziness. It was awful. 20mg of Prednisone did the trick. My bloods were normal for the first time! No inflammation! Wow.

Now I am on 10mg of Prednisone and am Methotrexate. This is not working out too well at the moment. Methotrexate makes me I'll and my hair won't stop falling out. My blood inflammation is rising.

Our health system tends to diagnose by meds. Scans are too expensive for me. I don't have insurance. Despite this, my rheumatologist has ordered me a CT scan through the public system. Thus is to check for an "undiagnosed malignancy ". Great. Don't know why my rheumatologist hasn't mentioned PMR.......

Frustrating. Getting an answer may take longer than you hoped! I feel like I will never know!

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Gosh you know when I hear all your stories I feel terrible for moaning.

Your all so amazing.

Well I think they try and avoid saying pmr for under 50 year olds but there are lots who have been diagnosed with pmr in their 40s.

I'm hoping to go back to work. I was just so fatigued.

I couldn't sleep due to pain. That at least has been helped a little by the amitriptyline.

It' the random sharp pains that change everyday that I can't get a handle on and make me cry.

I think I've just got to accept that it may take a long time to get to the bottom of this.

Thankyou.

Wishing you well.

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Oh also my bloods keep showing negative for inflammation. So also causing confusion.

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Gosh. No inflammation but you respond to prednisone and naproxen. Everything you find out is another clue. The random sharp pains sound horrible. Could that be nerve pain?

Rest up and be kind to yourself - and try not to Google too much! (I know it's hard!)

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Welcome to the FMAUK Community Scrumbly ! :)

I am sure you'll find this community a helpful and supportive place to be ! :) There's lots of posts to read and many lovely members to talk to about Fibro. Unusual to have a response to Steriod treatment as this is usually associated with Polymyalgia Rheumatica not Fibromyalgia so I understand why the Rheumatologist is making sure he does all the relevant tests before making a diagnosis. I know it can be so frustrating as my own diagnosis took over 2 years, so completely understand how you are currently feeling and so will many other members here too.

This post might be useful to read, link below;

healthunlocked.com/fibromya...

Please can I provide you with the FMAUK website which has a wealth of information about Fibromyalgia which may be of help to you

fmauk.org

As a newbie, please can I mention that members prefer to answer posts that are locked to this community only. If you wish to do this, here's a link that explains how to do it;

healthunlocked.com/fibromya...

I hope you'll find this community a online support network where you can get tips and advice from other members based on their experiences that will help you.

All the best

Emma :)

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Thankyou.

All my bloods have come back normal I've found out today. I have yet to have x-rays, back to rheumatology in April. The lower dose steroids aren't having the same effect. As still in pain, so really not sure about any of this really.

Thanks

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Gosh yes it can be so confusing can't it?! I remember those days well. All I can say is try to make a list of everything the medics of tested for and therefore are ruling our plus do enquire about whether they are doing a full Thyroid Profile and a test for Lyme Disease too :)

Hope this helps

Emma ;)

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Thanks Emma

I think I have definetly had the thyroid not sure about lymes disease.

My vitamin d was A little low but not enough to be prescribed anything which is interesting as already take vitamin tablet daily and omega 3 capsule.

I just still can't believe how long it takes to get to the bottom of things. Very frustrating.

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Oh yes it is and especially when we feel so rotten 98% of the time and dragging yourself to the hospital appointments with things being not any clearer. This is the trouble with chronic illnesses without any diagnostic test that is quantifiable in medicine terms and why research into Fibromyalgia is desperately needed. I am the founder of our local support group and have started a petition about needing research. How long can this be ignored by the powers that be with approximately over 3M people living with Fibro in the UK? I wish they would listen to us, it is so frustrating as you say :X

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Totally agree x this happening to me has totally knocked me for six ( and I know people are far worse than me) it has opened my eyes to the problems that people face. I really would like to help change this.

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Hi. Sorry for all the pain you’re in. It’s normal that they try and discount any other health issues first. If the steroids are helping it may well be Polymyalgia. That was the last thing my doctor tried and when they didn’t help at all he said fibromyalgia. I’ve never seen a rheumatologist either . I take anti inflammatory meds, pain killers and amitryptilene. Hope you get something to help. Pain never goes away totally mind you no matter how many painkillers I take x

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Thanks for your response.

I go through so many emotions at the mo. Which I'm sure you all understand. I tell myself to pull myself together and tell myself I have to accept that I have pain and then other times I get so angry that I am in pain and that nothing helps. I haven't tried much in the way on analgesics the gp seems reluctant to try things. I understand that they are as baffled as I am. Just hope I get the xrays to rule out any mechanical damage.

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If you are responding to steroids I think you may have PMR. My mother was diagnosed with this two years ago and responded well to steroids. She is now reducing the dose but appears to have developed fibro as well. Ask GP to check inflammation levels which would be higher with PMR.

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Hi Shelley

Thanks you.

All my bloods are negative for inflammation.

Although the rheumatologist did say I might have developed sero negative status which means my bloods would be negative.

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Just a hint, members will not know you've replied unless you use the reply under their original comment or you tag them using @ followed by their username :)

Hope this helps

Emma :)

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Thanks Mdaisy

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