In denial and scared.

[Gnd97]

Hello everyone. I’m not really 100% sure myself why I’ve come here. Maybe for some advice and reassurance.

I began complaining of back pain at 11 and following an MRI scan, I was told I had a prolapsed disc at the bottom of my back along with nerve compression. I was under paediatric care (filled with major pain meds) until I was 16 and became too old for that department and was then left to get on with life. I am now almost 26.

This pain has got continuously worse since then, and has travelled. I am constantly in horrendous pain from muscles spasms/cramp in my back, to shooting pain in my hips/knees/shoulders and coccyx bone. I have numbing and a buzzing sensation in my feet and arms. And sometimes a burning sensation on the skin on my hands. I have a migraine every morning.

Along with this pain, I do suffer with an awful memory and can often stutter - however I didn’t and maybe still don’t believe this is all connected.

After years of trying treatment both privately and through the NHS, and being robbed off with cocodamol to treat the pain, I finally got an MRI scan and had the results yesterday. My spine is fine aside from a new bulging disc elsewhere in my back. “There is nothing wrong with your spine” he said. However he then again asked me to explain my pain and symptoms whilst he ticked a piece of paper and then told me I have Fibromyalgia. I had no knowledge of this illness prior, except that I believe it came in waves. He said that this is not the case for everyone.

Every single symptom or pain I experiencing has been put down to this. But I have lived with pain my whole life. I am now being referred to a specialised pain clinic and my HP has been told to alter my pain medication.

I suppose I just want to know, does this sound similar to anyone else? Is the constant pain normal for other people, because I do not experience waves. It’s always there. Everywhere. Is there anything that will help?

He has told me “I know you wanted an answer and a solution to make the pain go away. I have given you an answer, but the pain will never go away, we just have to help you learn to now live with it forever”.

Please can someone respond. I’m confused and scared and possibly in denial.

 

[johnsalmon]

My spine is fine aside from a new bulging disc elsewhere in my back

this is what causing your pain you need to see a neurologist who would treat your spinal condition - on what you describe you don't have fibromyalgia
"I do suffer with an awful memory and can often stutter"
this is more likely to be from stress due to the continuing pain
I might also consider changing your GP.

 

[Gnd97]

My MRI was completed and reviewed by a consultant in the Muscular Skeletal department. I have seen the scan and the bulging disc is in the middle of my spine and isn’t showing any sign of compressing nerves. I asked if that’s what is the root cause of everything else. He has told some of the back twinges in that area yes, however the rest - no. Not from the bulging disc.

The same consultant asked me to describe all pain and symptoms I have. He then completed a Fibromyalgia questionnaire and I was given a tick for pretty much all of them.

Can I ask why you think it would be Fibro? So I can then put this to my GP? I’ve not seen him since being diagnosed so not going to head down changing GP as of yet.

 

[OldKarz]

Bulging discs can cause many of your problems however each one usually shows up a different set of symptoms depending on which vertebrae it is between. Without knowing position you cannot determine which symptoms you can write off as being caused by that bulge. I have a few bulging discs. Some cause symptoms to varying degrees and some don't because there is still sufficient room for the nerves to go by.
Some symptoms are stress related and some may be Fibro.

 

[Gnd97]

Hi For clarity the bulging disc is located between T7/T8 and isn’t showing and major nerve compression. So the consultant advised although it may be causing some pain in that area during certain movements, it’s not the cause for anything else

 

[Gnd97]

A second reply - Sorry! The consultant advised that stress may be the cause of the tension in my shoulders. But other than that - everything else has been pinned down due to Fibro

 

[sunkacola]

this is what causing your pain you need to see a neurologist who would treat your spinal condition - on what you describe you don't have fibromyalgia

This is not something we can determine, since we are not there nor are we medical professionals.

 

[Gnd97]

I meant to say - “why you think it wouldn’t be fibro?” Thanks

 

[sunkacola]

A second reply - Sorry! The consultant advised that stress may be the cause of the tension in my shoulders. But other than that - everything else has been pinned down due to Fibro

Hi there, and welcome to the forum.
Most of us have found that if we experiment with various things we can find things that will help with the pain and also help us to manage what we have to deal with, having fibromyalgia. My advice is all in a post that I will link to below. While pain medication is useful, it is not the only thing that you can use to help you to deal with this condition, and it is advisable to try other things so as not to depend too much on medication which could stop being effective, or could be discontinued for your use. A multi-pronged approach is usually best, involving diet and exercise, mental attitude, stress control and support, as well as determining what works best for you in terms of managing time and energy levels. We are here to help.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[sunkacola]

I meant to say - “why you think it wouldn’t be fibro?” Thanks

There's no reason for someone on this forum to assume that it is not fibromyalgia that you have. From what you say, it appears to me that it is very possible that you do have fibro. A definitive diagnosis is sometimes hard to get, and of course none of us on this forum can make that determination, but from everything you say it fits the criteria for fibro.

 

[johnsalmon]

This is not something we can determine

its som e thing I have suffered from since 16 the only difference is t4/t5

"horrendous pain from muscles spasms/cramp in my back, to shooting pain in my hips/knees/shoulders and coccyx bone. I have numbing and a buzzing sensation in my feet and arms. "

classic spinal pain from compressed nerve - key words - spasms , shooting pain, numbing
if you have seen a neurologist then get a second opinion from a different one.

a session with a physiotherapist and some tens machine treatment should ease the spasms,shooting pains etc if it does then buy your own tens machine (they are quite cheap (well under a $100) on the internet) in fact if the tens treatment works (and I will bet my beer frig on it) then you will know for sure that its not fibromyalgia
I wear my tens machine on my belt with 2 pads in my case left and right of t4/t5 most of the time does not heal the problem just stops the pain

 

[Gnd97]

Hi again I have seen my Upto date MRI scan. There is a bulging disc but no nerve compression. The consultant has said that this will be causing SOME of my pain the middle of my back. But not the cause for everything.

I have tried a mulitidue of pain meds previously which didn’t take my pain away. Tens machine, electro acupuncture, physio etc. gives me some SLIGHT relief. But it always comes back.

I’m pretty sure the consultant has it right that the bulging disc is not causing every single one of my symptoms. Thank you

 

[Gnd97]

Also, if you refer back to my original post you will see I have a diagnosis from a consultant that I do have Fibromyalgia.

I was simply asking for some advice and Seeing if anyone had similar symptoms in order to suggest things that would help. I would feel more comfortable taking a diagnosis from the consultant who has done physical assessments, reviewed my medical history, completed and reviewed my MRI scan and spoke with me in depth about my symptoms. But thank you for your input

 

[johnsalmon]

I was simply asking for some advice and Seeing if anyone had similar symptoms

fibromyalgia symptoms vary amongst sufferers some will share some of the symptoms and some will not. fibromyalgia pain will differ from say Sciatica type pain and the medication used is different from say fibromyalgia type pain ie generally codeine type medications do not have any effect on fibromyalgia pain - what you describe is more a Sciatica type situation For fibromyalgia lyrica is the common medication

I have very similar symptoms to you and with me they are caused by a herniated disk and calcium regrowth on the vertebrae ( I'm too old to have spinal surgery) I also have fibromyalgia and its a totally different pain - both cause stress which gives you low concentration etc ie brain fog

"He has told me “I know you wanted an answer and a solution to make the pain go away. I have given you an answer, but the pain will never go away, we just have to help you learn to now live with it forever”."

you do not have to suffer from fibromyalgia pain for the rest of your life - there is fairly good medications such as lyrical,gabalin,preprednisone in fact over 20 of them (some good some not )
I take lyrica which took the extreme pain ( I want to die type) away then I took solone which at the moment I am on a trail to work out the best dose

For my spinal problems I take codeine and use a tens machine when required

The pain may not go away but it can be minimized and controlled

fibromyalgia is like autoimmune diseases as far a doctors go - they really do not fully understand them and believe it or not there are doctors out there that do not believe that fibromyalgia actually exists. and some that are too quick to say your got an autoimmune disease or that your got fibromyalgia just to find a solution.

 

[JayCS]

Hi Gnd Like @johnsalmon and yourself I can imagine your symptoms might also be something else than fibro (too), possibly to try a neurologist or two, but definitely to try a physio and a TENS machine. These may well help whether it is fibro or something else. And like @sunkacola and yourself I can see it possibly being all fibro.
Checking the (2016) fibro criteria yourself is something I always suggest, and in your case it can instead of just 'taking' a diagnosis, help you see for yourself (attached). This self-empowerment and to speed up getting a diagnosis is why the 2022 UK guidelines also give patients an online checklist. That I think will help against feeling
However what the original 2016 criteria do, but the UK adaptation doesn't, is state clearly that we may have fibro and something else. So for me I take each symptom itself, get it checked several times, and treat it myself - I learn from experts, but have ended up finding I (now) do it better in the end. I even take each symptom as possibly being due to fibro and something else, because that opens up more treatment types.

I would feel more comfortable taking a diagnosis from the consultant who has done physical assessments, reviewed my medical history, completed and reviewed my MRI scan and spoke with me in depth about my symptoms.

In the UK, all people who I've read have been there seem enthusiastic about Chris Jenner / London Pain Clinic - private and gives the local docs his advice on fibromyalgia - or probably all of it.
It'd be great if this is the pain clinic you are being referred to. UK pain clinics seem to vary greatly....

I suppose I just want to know, does this sound similar to anyone else?

Here I again see it like @johnsalmon that there's quite a bit that sounds more neurological / sciatica type, but I wouldn't exclude the whole thing or even quite a few of the symptoms being both. The nerve symptoms would need different treatment, whether sciatica or fibro. But as someone who doesn't tolerate meds I keep my fingers off of them, and I'd concentrate on the physio and TENS mentioned.

He has told me “I know you wanted an answer and a solution to make the pain go away. I have given you an answer, but the pain will never go away, we just have to help you learn to now live with it forever”.

Is the constant pain normal for other people, because I do not experience waves. It’s always there. Everywhere.

I'd say your doc is basically right about everything you've quoted what he says about fibro, incl. that it doesn't have to come in flares. But there may be a misunderstanding about 'waves', or 'flares' as we call them - and the word does make a slight difference. Waves would mean that something comes regularly, ebbs and flows. Flares are often experienced as something that comes (irregularly) out of nowhere, but I believe that's because the triggers aren't identified. The easy and for some comforting answer is "that's fibro".

I've had intolerances and back pain all my life - different to yours, but constant as soon as I don't work on it.
Since fibro came fully 2019, I've been in a continual full flare. Meaning I'd have constant high fibro pain if I didn't work on it ("100s" of self-treatments every day), including turning my whole life upside down - not just once, but continually and regularly, cos of fibro and additional conditions. So I can influence it, by tracking in detail the symptoms and what make them worse and what make them better. So I'd say I know 80% of my triggers (of all my conditions) and can find out half of the rest too, maybe hours, days, weeks or months after (using my blog). Most doc suggestions made it worse.

Now what'd interest and praps surprise me is if your pain never varies in intensity. That'd be a new one.

Is there anything that will help?

There are many 100s of things that will help and this is a good place to be to find the right ones for you. But it makes long, hard guinea pig trialling necessary.
For many conditions @sunkacola's advice post, a good physio and searching for exercises on youtube I think most people will find the most helpful as starting points. As well as @johnsalmon's recommendation of a TENS, or similar, for fibro and for nerve stuff. Not sure about trying diet, but mental management and supps would I think be next up, depending on what you've tried and your inclinations....