Secondary fibro or is it milder than primary

[lizzy1959]

Just been told by my rumatlogest that my fibremalagr is secondary dose it mean it get worse.

[Veggiehog]

I've not heard of secondary Fibro - sorry

[Greenpeace in reply to Veggiehog]

Hi Veggiehog , Secondary Fibromyalgia means that you had other diagnoses,before being diagnosed with Fibro.

It doesn’t necessarily mean that your Fibro will get worse because of this. Maybe though, your other diagnoses may give you a lot of pain, and because of the pain of your Fibro on top of this, it might make your pain seem worse.

Take care.

GP. 😊😊

[Hidden in reply to Greenpeace]

I can’t get my head around this secondary fibromyalgia Even though it was explained to me this morning What are you sera posed to do if you was going to claim PIP Say to them Iv got secondary or third fibromyalgia I’m not sure Atos would just laugh at you

[xOceanx in reply to Hidden]

Hey crome,

verywellhealth.com/fibromya...

I know alot with secondary, they have diagnosis like neck injury from an accident or lymes or lupus etc first.

Some have over 10 plus diagnosed conditions before getting fibromyalgia symptoms/diagnosis.

Just means medics believe that fibrom symptoms may be helped by sorting out the primary conditions first. Just like my mate did, where with primary fibromyalgia they see it as they have nothing to investigate for the cause for the fibromyalgia symptoms.

[Hidden in reply to xOceanx]

NHS is the only site that describes Fibromyalgia Iv never herd of 10 other issues that move on to fibromygia When you go to the rheumatologist for test on Fibromyalgia there’s a American 40 points test if you pass this then you get diagnosed in writing to say you have the condition There is no gentle move on to Fibromyalgia from other things like neck injury the other main cause is pregnant lady who often suffer after child birth I don’t like to be rude as I no this is a friendly site for poor soles who have fibromyalgia or CRONIC PAIN At my last visit to the hospital I had four docters sat in my appointment so as to lean about fibromyalgia Iv also been to Kings-college London to be studied by Junior this docters as I am serious case of fibromyalgia Ok little Toed

[Greenpeace in reply to Hidden]

Hi Hidden , don’t worry about it. It’s just medical talk meaning that Primary Fibromyalgia is when you get diagnosed without having any other conditions, and Secondary Fibromyalgia is when you had other conditions before you were diagnosed with Fibromyalgia. They are both a diagnoses of Fibromyalgia.

If you were to apply for PIP, you would just say that you have been diagnosed with Fibromyalgia, and carry on filling out the form in the normal way. The main thing is the diagnosis of Fibromyalgia.

I hope this puts your mind at rest.

Take care.

GP 😊😊

[Hidden]

Fibromyalgia gets worse ! There is no cure for it There’s no such thing as secondary fibro This docters is a donut that’s for sure 😀

[Al10]

Think primary is where it is just fibro. Others have arthritis with fibro pain on top for example. They say the fibo pain is worse? Hence the secondary diagnosis. I started with fibro. It's my normal then life brought other things so it has all gotten worse. Would it have progressed otherwise? I don't know.

[Greenpeace in reply to Al10]

Thanks Al10 , you’ve explained it a bit better than I did 😊.

Hidden , if you don’t mind me saying, there is such a thing as Secondary Fibromyalgia diagnoses, and also Primary Fibromyalgia.

Take care.

GP. 😊😊

[Starrz in reply to Greenpeace]

It only means that you also have fibro. We're you also given a diagnosis of of something else before the fibro? That. Will be your primary. I was first diagnosed with psoriatic arthritis a year or so later they listed fibro as my secondary. It only means something else came first.

[Hidden in reply to Greenpeace]

Sorry green peace there is only one Fibromyalgia diagnoses and the diagnoses is made up of an American points system by the rumeatolgy and only they can do this your doctor can’t diagnose it or neurology If you go to NHS choices for Fibromyalgia it clearly says its wide spread pain all over the the body There’s to many people coming on this forum just saying they have fibromyalgia that haven’t even been diagnosed I no we accept people with chronic pain and some are just simply lonely Fibromyalgia is a disability’s that affects all four limbs , you get fibro fog and fateag Headaches and worse cases get tinutus Iv had fibromyalgia for 20 years and studied the condition But if you want to stick to what your saying no worry’s

[Mdaisy in reply to Hidden]

Good Morning.

Yes there is only one Fibromyalgia but it can be diagnosed as either a primary condition meaning you have no other conditions or as secondary if you have another condition, that maybe you have had for years or just been diagnosed with ie: Rheumatoid Arthritis, Hypermobility etc. I know you say you've researched the condition however this is more medical jargon to explain to other medics and indicate to them whether Fibro is the only condition or if secondary to something else and it triggers any other medical professional ie: if patient admitted to A&E to know that thre are other medical history involved.

I don't think Greenpeace was saying there are 2 Fibromyalgia diagnoses, as I think maybe you've misunderstood what is meant by secondary as explained above. GP was trying to further explain that Drs do refer to Fibro as primary & secondary. If you'd like to read more do Google primary & secondary Fibro. The main difference being with secondary you have another medical condition that can cause further issues that may make Fibromyalgia flares worse and meaning often that learning to manage or treat the Fibro can be made more difficult especially if the other condition is uncontrolled or not treated correctly.

Hope this makes sense

Emma

P.S Sarahvit Hope this helps explain what is meant by primary & secondary Fibro here in the UK - might be different between USA medics maybe, I don't know!

[Hidden in reply to Mdaisy]

Ok Emma got it now thank you Going to Dover Castle to try and hobble round the castle but will be good day xx 💋

[Mdaisy in reply to Hidden]

Oooh....sounds nice walk - take it steady & have a fun day out!

[Hidden in reply to Mdaisy]

Thanks there’s a lot of steps I believed and there was but had a nice pick nick

[honeybug in reply to Greenpeace]

Hi Greenpeace 🌸🌿🦋

I’m across the pond. I worked in medicine and here when a diagnosis is primary it means it stands alone without influence from other conditions. When secondary it means it is caused by another condition. I’m just explaining how it is here

When I was diagnosed with FM about 36 years ago you had to test positive at 11 pressure points plus other symptoms to be diagnosed with it. Being such a new and highly controversial disease then I’ve lost count at the number of times I’ve been told I was crazy didn’t exist...but those same naysayers also declared that MS wasn’t real too.

Thank you for reading my reply.

😊🌸 🤗💕😘

[Midori]

OK; The way I read it is that your Fibro as an 'add-on' to another condition, if you already have a Rheumatoid condition, for instance, the other condition is the primary one. Hope that helps.

[Sarahvit]

I have been diagnosed with fibro in 94. I never herd of secondary fibromyalgia but have herd people say they have “a touch of fibro” in there shoulder or say they have fibromyalgia and is able to read novals with no fibro fog. So I don’t know if these people were misdiagnosed but fibromyalgia you have wide spread pain in the 4 quadrants of you body upper, lower, and both sides of your body, have at least 11 of the 18 trigger points, have had symptoms for 4-6 months with all other possible diseases ruled out that would cause the same symptoms. Symptoms wide spread pain, fatigue and fibro fog (memory and cognitive problems). My experience with fibro is that it gets worse over the years, oh is deabiliting, and it is a lonely disease that it invites other diseases to join the party. It is an autoimmune disease which I think was added on a few years ago. So I would recommend a second opinion. I knew a doctor who use to diagnose all of his patients with fibromyalgia. He diagnosed my ex (we were married at the time) with fibromyalgia and other patients who needed surgery with fibromyalgia. I was still working at the time and was hearing all these terrible stories. I was a RN and licensed minister at the time. So I was hearing all of this through work. We were told about Dr. Williams in Ugden UT who became our doctor who confirmed my diagnoses of fibro. My ex was poorly managed diabetes. Sorry for rambling on but getting a second opinion is a must when fibromyalgia is thrown around without all the criteria’s for diagnosis. 🤗💕🦋

[Mdaisy]

Welcome to the FMAUK Community lizzy1959 !

Fibromyalgia can be diagnosed as either a primary condition meaning you have no other conditions or as secondary if you have another condition, that maybe you have had for years or just been diagnosed with ie: Rheumatoid Arthritis, Hypermobility etc. It is medical jargon to explain to other medics and indicate to them whether Fibro is the only condition or if secondary to something else and it triggers any other medical professional ie: if patient admitted to A&E to know that thre are other medical history involved.

It's the same condition, however if secondary you have another medical condition that can cause further issues that may make Fibromyalgia flares worse and meaning often that learning to manage or treat the Fibro can be made more difficult. This is especially true if the other condition is uncontrolled or not treated correctly, but if it is well controlled it should have less of an impact on the symptoms of Fibro.

As a newbie, I've noticed you haven't locked your post to this community only. If you wish to do this and find out more about security please read the following post;

healthunlocked.com/fibromya...

Also please feel free to find out more about Fibromyalgia by visiting the Fibromyalgia Action UK website fmauk.org

Hope this helps

Emma

[Peep44]

My rheumatologist said I had RA and once that was under control the fibromyalgia symptoms should ease. It's really annoying trying to work out which symptoms ate for which. It was easy at the beginning, but the inflammatory arthritis is still not under control and I have a lot of new weird symptoms which I can't pin on either diagnosis. Such fun!