Fibromyalgia diagnosis : Hi everyone soz in... - Pain Concern

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Fibromyalgia diagnosis

Betsy50 profile image
39 Replies

Hi everyone soz in advance but I'm having a real bad pain day it's awful. My question is does anyone on here have fibromyalgia? I believe I have it been complaining to my gp for some time now . The pain stops in one place then starts on another this is non stop !!! I'm going back to Painmanagement next month does anyone think they could diagnose this ? Any feed back would be greatly appreciated thanks

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Betsy50 profile image
Betsy50
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LeighBlyth profile image
LeighBlyth

Fibromyalgia is a label, and a 'diagnosis' of fibromyalgia really means:

"We don't know why you have all these pains but a lot of other people have them too".

Fibromyalgia is often described as "poorly understood" but idiopathic (the cause is not known) would be the correct term (until now).

The symptoms of fibromyalgia are very real, and expletively painful at times.

Based on my recovery from 20 years of depression and a lifetime of pain (all sorts of types shifting all over my body) I offer a simple explanation for all the pain and weird sensations, the fatigue and other symptoms associated with fibromyalgia and how recover your health by focusing on how you use your body.

Ask yourself:

How is your physical condition?

Is your body free of tension?

Does it feel balanced and comfortable?

Do you move well? Or can you feel areas that are restricted?

Be aware how the pains and weird sensations move around your body as you move. We are interconnected from head to fingers to toes and restrictions in one area can have distant sensations.

Or is your body stiff and tense - if so no wonder you experience pain?

Is your posture (the positioning of your body) good? If not, no wonder body tires easily and you experience pain?

Myalgia

If you are not using the right muscles you are using the wrong muscles which results in myalgia (muscle pain).

The right muscles to focus on are the "5 main muscles of movement

" .

If you don't use your main muscles of movement other areas of muscle try to compensate but they become stressed, sore and fatigued and the body becomes imbalanced. "myalgia of imbalance" - what I believe is the basis of "fibro hotspots". From personal experience these areas get more widespread over time as the body becomes increasingly stressed and posture worsens.

The 5 main muscles of movement are:

1. pelvic floor

2. rectus abdominis

Think of the pelvic floor muscles as the Base of the body, a solid foundation that should be active and secure.

The rectus abdominis are the body's central Line.

From pelvis to chest, these muscles should be active and elongated, supporting movement of the rest of the body.

Recovery starts from finding your Base-Line, working with these muscles and building the connection between body and mind. Then thinking about the other muscles too. (It was several months before I starting working with the other muscles - Base-Line is the key to healing the body.)

Start with "breathing with your Base-Line".

baselinehealing.com/techniq...

The other main muscles are:

3. gluteus maximus.

4. rectus femoris.

5 trapezius.

Restricted Movement, Tension & Pain

In a response to inflammation - caused by injury, infection, trauma, auto-immune/stress and as an attempt to compensate for the lack of central support that should be provided by the main muscles of movement, physical restrictions form in our bodywide web connective tissues that reduce our range of movement, literally stiffening us over time.

These restrictions cause tensions that radiate throughout the whole body, from head to fingers to toes. The sensory information generated by these restrictions are the source of many

pains and weird sensations associated with fibromyalgia.

People who use their body correctly are able to shake off old injuries and return to a good posture but those of us that don't, the body becoming increasingly tense, unbalanced and misaligned over time.

Fibromyalgia: A progression of pain when the body is not balanced. Traumas are stored rather than released.

I believe the pain sets in early when the body becomes imbalanced and, if you were pain free, then it's likely the pains are considered significant enough to seek medical advice leading to an early diagnosis of fibromyalgia.

Or has it been slow deterioration? A list of painful symptoms and old injuries that don't seem to heal and you've ignored the twinges, aches and spasms as they increase over the years - after all a bit of pain is to be expected as you get older, right?

Cumulative damage over the years can result in layers upon layers of restrictions. Chains of tension zig-zagging from left to right, inside to out, front to back, through the whole of the body with a vastly reduced range of movement.

Chronic pain affects our mental health. The fibro fog, stress, anxiety, depression.

baselinehealing.com/fibro/e...

Fibromyalgia Treatment

I believe fibromyalgia can be treated by focusing on using the right muscles and learning to release the physical restrictions to balance and align the body but it takes time and focus to learn to use your body correctly and release the pain.

How many years, or decades, of accumulated pain do you have to work through?

Everyone has their own individual trauma imprint to work through, but the key to healing is the same:

Focus on your Base-Line muscles becoming stronger and longer and develop your conscious proprioception skills. (Proprioception is our sense of positioning, movement nad balance).

Learn to feel how to move through the tension and release the pain. Little by little, regain your full range of movement.

This is not a magic quick fix but I feel better than I ever have done before.

mimimouse profile image
mimimouse in reply to LeighBlyth

This sounds similar and along the same lines of ring muscle exercises .x

LeighBlyth profile image
LeighBlyth in reply to mimimouse

I don't know what ring muscle exercises are - a internet search brings up gymnastics rings which would be classified as very advanced stuff in my eyes!

Do you have more information ? I'm always looking for things that could help.

mimimouse profile image
mimimouse in reply to LeighBlyth

Hi, yes the lady who devised the method is called Paula Garbourg. Her book is now out of print called "The secret of the ring muscles" They are quite powerful exercises, her principle is that because all of our sphincter muscles are connected by exercising one,ie the mouth or the eyes the rest are activated too. I am not very good at putting it into words but you will find info on Google by mentioning her name. Xx

LeighBlyth profile image
LeighBlyth in reply to mimimouse

Thanks for the info. :)

From what I've read about the Paula method / ring muscle exercises they seem like a good thing to do but from personal experience I don't think they would have been of help to me before I started working with the 5 main muscles of movement. I was too out of touch with my body and had so much physical damage restricting my range of movement for the exercises to be meaningful.

The sphincter muscles of the anus and urinary outlet are important parts of activating the pelvic floor. I think I need to stress this more, so I will refer to the pelvic floor ring muscles in more detail. (Saying activate the pelvic floor is a bit vague, Kegel exercises provide some information - lots of bits of the same puzzle.)

Now that I have awakened my sense of conscious proprioception (my sense of position, balance and movement - the connection between body and mind) the ring exercises feel more valuable. I can sense/see/feel the relative positioning of my midline anatomy (linea alba between the rectus abdominis muscles and supraspinous and nuchal ligaments between the trapezius muscles) and have a guide for body alignment and balance. Working with the sphincter muscles of the eyes/mouth/nostrils provides more sensory information about the relative positioning of my head in relation to my midline so I can move in order to increase my alignment.

conscious proprioception: baselinehealing.com/techniq...

The Alexander Technique is something I came across years ago but again not having the connection to my main muscles of movement I was missing the key to it making sense but now I get it.

There are a lot of techniques out there that will help - when the right muscles are being used - but if the right muscles aren't engaged and the body is so imbalanced and misaligned with physically restricted tissues then working from Base-Line is the key to getting the benefit from other techniques.

Pilates, Yoga, Tai Chi ... all are better when the main muscle of movement are the focus of the movement, positioning the rest of the body so other muscles can work as they should.

Oooft, that got a bit long! Thanks again.

mimimouse profile image
mimimouse in reply to LeighBlyth

Thank you, I will check out the link.xx

LeighBlyth profile image
LeighBlyth

This is an intro. post in this forum with a picture of the 5 main muscles of movement: healthunlocked.com/painconc....

I can't stress enough how healing starts with finding your Base-Line muscles. Pelvic floor Base, rectus abdominis Line.

Have a look at some pictures, find the muscles on your body and think about them activating. Keep working at it.

If you've any questions, comments or criticisms please let me know!

Betsy50 profile image
Betsy50 in reply to LeighBlyth

Hi oh wow you know your stuff !!! I had back surgery in 1999 and have suffered chronic pain ever since !! The older I'm getting the worse the pain is tbh. I will look into what you have said I'm just feeling really worn out but I'm back in touch with Painmanagement and will speak to them again via videocall. I have alot of altered sensations on my left foot which I've had for over 6 years now and have took plantar fasciitis on it now. Thank you very much for replying any advice is greatly appreciated

LeighBlyth profile image
LeighBlyth in reply to Betsy50

Whether you are standing, lying on the floor or just sprawled on the sofa, imagine your midline at the front of your abdomen - from pubic symphysis of your pelvis to your navel (bellybutton) to the xiphoid process of the sternum (the bottom of your breastbone) - extending as your breathe in.

For images on these midline markers:

baselinehealing.com/anatomy...

As you breathe in use your fingers to tap up the front of your abdomen, extending your rectus abdominis muscles and imagining these three markers becoming more aligned.

Keep doing it as you breathe. Move the rest of your body as feel natural - wiggle your toes, bend your knees, shrug your shoulders ... whatever feels right.

That's all you need to do to start.

That and try to activate your pelvic floor muscles!

21 years is a long time to be in pain so go easy on yourself, no wonder you feel worn out.

It does take time to learn to use the right muscles if you are not used to using them but a little thought about the condition of your body will go a long way to starting to help yourself.

Betsy50 profile image
Betsy50

GM dolphin66 thanks for replying to me. I'm at my wits end with all that going on feel like I'm hitting a brick wall !!! The pain just moves from one area to the next Bern going on for some time now. I have a video call with Painmanagement in a few weeks I'm hoping they can help me more than my gp.

Dolphin66 profile image
Dolphin66 in reply to Betsy50

Hi Betsy

Hoping you get some answers hun, I have been suffering for many years.

I feel like any excuses the GP’s can use they will fob you off no matter what

Dolphin66 profile image
Dolphin66

Hi Betsy, Yes I was diagnosed with Fibromyalgia, October 2017, which took years. I had numerous appointments with my GP.

Over the years I was diagnosed with Tennis Elbow, Frozen Shoulder, Carpal Tunnel Syndrome, had numerous Blood Test taken to rule out, Arthritis etc.

I told my GP, ‘’ I want a referral to see a Rheumatologist, as I have had numerous blood test of which are showing nothing, yet I am suffering with pain every day, not sleeping, and feel, emotionally and physically drained.’’

Yes I had to wait a long time, but eventually got my appointment.

I have numerous other medical conditions, I am an Insulin Dependent Diabetic, have Stress Related Irritable Bowel Syndrome, Anxiety.

Hoping you get answers soon, but tell your GP you want a referral, to see a Rheumatologist, keep a pain diary hun.

As Rheumatologist will ask you lots of questions, I wake up in the morning, I feel stiff and cannot move due to pain.

Am here if you would like to chat, sending hugs 🤗 x

Betsy50 profile image
Betsy50 in reply to Dolphin66

Hi dolphin66 oh thank you so much its greatly appreciated. I was just going to ask at what point did you get referred. I had back surgery in 1999 and basically had pain ever since. I suffer repeated flare ups sciatica stiff sore back etc etc . My left foot has all these altered sensations and not one medical person has explained why ? They are just words but no investigation. I just cant concentrate on anything anymore because of pain. I took bursitis on my right shoulder but fortunately a steroid guided injection worked then I took pain on my left shoulder and again injection worked. I fractured my wrist last april and the pain is horrendous I'm attending an advanced physiotherapist but it's just not taking the pain away if anything it's worse!!! I use a walking stick so she changed the type of stick to one where I rest my palm on handle. I constantly feel lethargic and my sleeping pattern awful !!! Sorry for going on abit but it's just at the point it all wearing me down. Thank you so much for listening to me rant on x

Dolphin66 profile image
Dolphin66 in reply to Betsy50

Hi Betsy,

Referral took abouts 6 months, waiting to see a consultant.

With situations being as they are today goodness knows how long that will take.

Sending 🤗 hugs

auntysue profile image
auntysue in reply to Dolphin66

Just reading through these answers, some great advice, wow you could be describing me.

Dolphin66 profile image
Dolphin66 in reply to auntysue

Hi auntysue

Lol, I have so many tests MRI scans and CT, numerous blood tests, all showing nothing.

I also started having seizures on 24th June, whilst spending the day in A and E, blood tests showed, abnormal thyroid function, am still waiting to see a Neurologist and Endocrinologist, feel just about ready for the scrap heap.

auntysue profile image
auntysue in reply to Dolphin66

Oh bless ya, well I don't know what an endiothingymebob is, so I must have escaped that .

Darkin profile image
Darkin in reply to Dolphin66

Have you tried Preds. ?

Betsy50 profile image
Betsy50 in reply to Darkin

No I taped off morphine 6 months or so ago it was so hard but I got there I've been on gabapentin for years and now co codomol that actually do nothing but give me constipation which is not good cos I have incomplete caudia equine syndrome. Gp wont prescribe anything else so hoping Painmanagement can maybe suggest something that actually might help

Dolphin66 profile image
Dolphin66 in reply to Darkin

Hi DarkinI am on Dihydrocodeine 30mg 1 three times a day, Gabapentin 900mg and Amitriptyline 50 mg. Plus other medications for other medical conditions.

cyberbarn profile image
cyberbarn

Many people with a condition called Ehlers-Danlos are being misdiagnosed with fibro. You may want to look into that before you see a rheumatologist, your GP can help with that.

rcgp.org.uk/clinical-and-re...

Betsy50 profile image
Betsy50 in reply to cyberbarn

Hi cyberbarn thanks for your reply so what exactly is that ? I'll need to write everything down

cyberbarn profile image
cyberbarn in reply to Betsy50

I am not saying you definitely have it, but it is worth making sure you don't as many with EDS are misdiagnosed with Fibro.

people with EDS have hypermobile joints, that means they move beyond the normal range of movement, although they often stiffen up as people get older. They usually have skin that is more stretchy too. Because their ligaments are more stretchy they get injured more easily, what is known as micro tears, and that causes inflammation and pain. It could be why the pain seems to move around. As one joint gets better, another one gets worse.

After years of having pain, the brain sort of gets used to having pain all the time, and it gets ramped up to 11. The pain is actually very exhausting!

As I say, you might not have it, but when people start talking about repeated injuries and things like bursitis, tennis/Golfers elbow, shoulder problems and so on, it is always worth making sure they don't have EDS.

There is no cure for EDS, but physio needs to be a little different than what is normally given.

Betsy50 profile image
Betsy50 in reply to cyberbarn

Thank you yes this fractured wrist not getting any better and that's nearly one year plus I have these weird white Mark's at the fracture area. I actually believe it or not done it in my bed !!! You would normally get a bone density scan but that's not happening due to covid the pain really is horrendous. I'm waiting on advanced physiotherapist calling me I've had enuff now I just cant do the thumb exercises so I had a distal radius fracture the point where the thumb meets the forearm

cyberbarn profile image
cyberbarn in reply to Betsy50

I hope the MSK service is helpful. I had a bad flare of pain in my hip and SI Joint and am having a call this week for that. But I also have hand and thumb problems where doing the usual exercises that the physios give only seems to make things worse.

Betsy50 profile image
Betsy50 in reply to cyberbarn

Hi yes I agree just spoke to advanced physiotherapist told me to put my splint back on a few hours a day she going to speak to my gp told her I've had enuff now I want checked out for fibromyalgia and rheumatoid arthritis it's just not normal this pain moving about over my body

cyberbarn profile image
cyberbarn in reply to Betsy50

Just remember that fibromyalgia isn't a condition or disease, it is a description of symptoms. It is better to figure out what the underlying cause is. Fibromyalgia includes mental health problems as well, so if you don't have depression and anxiety, don't let them fob you off with fibro.

Betsy50 profile image
Betsy50 in reply to cyberbarn

Hi cyberbarn yes I have depression and anxiety is a new thing for me. I lost 6 family members over a 3 year period including my beloved mother it's been traumatic for me had counselling through cruse who were amazing they helped me except all the deaths but due to nursing my mother it's like I'm on high alert ever since my mind racing all the time cant sleep. Never mind the pain hurting so bad my heart is broken in two just so difficult to try mend it. Thanks for listening to me and I'm sorry if I sound so depressing but it helps to get it out and talk about it

cyberbarn profile image
cyberbarn in reply to Betsy50

So much heartbreak. You don't sound depressing, you sound like you have a situation that has really difficult for you. I am glad that Cruse helped, they are really good and helped my mother-in-law too. It sounds like you are dealing with two things; a lot of grief, and pain. And they will be interacting with each other and making things even more difficult to deal with. It sounds like you are doing well considering all the circumstances! Keep going, you will get through this.

Betsy50 profile image
Betsy50 in reply to cyberbarn

Hi cyberbarn yes the counsellor said it's been so traumatic alot of grief to get through but yes I'm getting there slowly. I know this will not help with my pain but you cant just stop grieving that takes time in its self. Thank you so much for your support it truly is greatly appreciated x

Aoibheann profile image
Aoibheann in reply to Betsy50

Hi Betsy50, I feel you are describing me. There is Free exercise classes online called Versus Arthritis taken by Leon and his mum Janet. All very gentle and at your own pace. Sign up and give it a try. X

Betsy50 profile image
Betsy50 in reply to Aoibheann

Hi there thank you for your reply I will have a wee look at that thanks

TrishToo profile image
TrishToo in reply to Betsy50

It’s a Rheumatologist that will diagnose Ehlers Danlos Syndrome (EDS) and yes the top man in this field, Prof Rodney Grahame believes many diagnosed with fibromyalgia actually have it. Check out the EDS website with the zebra logo. My daughter has it. It’s genetic. A faulty gene. So you’re born with it but she wasn’t diagnosed until she was 38. Years of doctors not believing you. Beware Gabapentin and Pregablin. Evil drugs. Doctors go on about opioid addiction so urge those two onto patients but these are very hard to come off too. I’d never take them again.

Betsy50 profile image
Betsy50 in reply to TrishToo

Hi trishtoo wow that is very interesting thank you for that information. I've not long spoke to Painmanagement consultant he arranging another mri scan on my back I had a fall in January and I'm in severe pain with my hip and back. I had surgery on L5 in 1999 and lived with pain ever since. My operation wa n emergency as I developed cauda equine syndrome so been left with bowel issues on meds for life. As I get older the pain going fro joint to joint is terrible never mind sciatica nothing helps me tbh. The thing is they refuse to operate on me a 2nd time so what am I ment to do 30 years of misery it's really wearing me down now. Hope your well take care

DISC profile image
DISC

Pain Specialist diagnosed me so seeing the Pain Management team is a step in right direction. Good luck.

Betsy50 profile image
Betsy50 in reply to DISC

Hi disc oh really that's good to know thanks. I've previously attended Painmanagement but didnt have all the issues I have now it was more my bad flare up sciatica back pain that floored me for 6 months n couldnt walk. Just doesnt seem right the pain moving around my body

Darkin profile image
Darkin

I suffered from upper arm pain and stiffness which developed out of the blue, got so bad I had difficulty dressing myself and even had difficulty fastening my car seat belt. I was at my wits end. Suffered it for a few weeks and eventually saw a GP who initially prescribed me loads of codeine which did nothing to relieve the pain. Over the course of a day the pain subsided and i could get a decent nights sleep. However the problems returned in the morning. So bad i set my alarm at about 4am and took painkillers, paracetamol, ibuprofen and codeine to attempt to alleviate the pain in time to get up. After a blood test was prescribed Prednisolone which stopped the pain immediatly. Miracle ! After a few weeks stopped all medication and the problem has never recurred.

sparkle557 profile image
sparkle557

I’m 20 yo and I suffer from such random pains that even the Drs don’t know why they happen. I looked into Fibromyalgia and I think it could be something I have! The symptoms overlap so much i don’t know what else it could be.

Betsy50 profile image
Betsy50 in reply to sparkle557

Hi sparkle well my gp has done blood tests that he said he will expand not quite sore what they looking for but the inflammation just moves around never goes away and after 6 years complaining I'm tired of it. Hope your okay

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