Still querying diagnosis: Good morning... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Still querying diagnosis

Furmummy
Furmummy

Good morning everyone.

I have had lower back and hip pain for months now GP saying fibro worsening. But without further investigation how do they know. If frustrated me.

Is back and hip pain another symptom of Fibromyalgia?

56 Replies

Hi Fm - well yes, both definitely are/can be. But of course we can always beg to differ or make sure, I always do. Alternative & better route to getting docs to scan it (x-ray, scintigram, mri), 'd be letting a good gentle physio (e.g. osteopath) look at it and do something about it at the same time and gently trying exercises like back yoga. On my scans nothing much shows up, but physio helps a lot.

Furmummy
Furmummy in reply to JayCeon

I've been getting physio since January and it's helped with part of my back pain, but not my hips. My physio says it's posture related. But I get the feeling she isn't a believer of Fibromyalgia.

JayCeon
JayCeon in reply to Furmummy

Good start, but sounds like shopping around would help... And there are 20+ types of "physio" I've tried, active and passive. Osteopathy or acupressure for instance is something completely different to normal physio, and I need/ed these as a fundament. Any of the many different types of yoga alone, qi gong, tai chi... Many different types of teachers live, on DVD, on youtube...

If it's posture related, they of course should be helping with posture. And/or medical insoles could help. Using a body scan they measured some out for me, which were OK, but actually didn't help that much (1mm pelvic obliquity, scoliotic).

If someone doesn't believe in fibro that may not make that much a difference in the way they treat some of your symptoms (which after all may NOT be fibro), but if it doesn't help enough/any further after 3 months and they get on your nerves with misunderstanding you, I'd change (probably without pausing).

Furmummy
Furmummy in reply to JayCeon

Thank you.

Greenpeace
Greenpeace in reply to JayCeon

Hi JayCeon, great answers. I see you’re from Germany, and your Healthcare system may work differently from ours. The NHS doesn’t give us choices, we go where we’re referred to, unless we go private. Also with the Pandemic there are are very few people being referred unless it’s urgent/emergency, and even then the waiting lists are long.Same goes for changing Drs. In some of our areas there are no other Drs to change to.

I hope you don’t mind me explaining this to you, but I thought it may give you a better idea of how our Healthcare System works.

GP. 😊😊

JayCeon
JayCeon in reply to Greenpeace

Hi Greenpeace! :-) No problem at all explaining, altho a part of my family still lives in the UK... :-) "Shopping around" was (deliberately) phrased very laxly, I admit, even for GE. Yes, there seem to be generally less doc-choices in the UK and more CoV-restrictions. But actually I am here arguing that altogether my 45 docs harmed more than they helped. (Docs here btw don't prescribe the meds you are used to getting, especially in our clinics, because they argue that physio-stuff, pacing and coping strategies etc. are the mainstay and meds don't help. - Which fits to my oversensitive body anyway.)

Not sure how much you mean physios, too (system & CoV). But generally gentle 'deep' things like osteopathy and acupressure are usually only paid either by private insurances or out of pocket - here like everywhere. Generally I would still suggest "shopping around" there, money & CoV permitting... (I myself prefer better health to a car and hols, but YMMV.)

But what I was mainly talking about - for hip & back, but not only - was: looking for cheap/free choices/options in books, DVDs, online, zoom courses and youtube tutorials. Most of the things that help me are free, can be done alone, and they just need the motivation to self-care all the time ;-D. Get me?

Greenpeace
Greenpeace in reply to JayCeon

I get you loud & clear. I would argue your reply is very detailed, and suited to you, and what you’ve tried, not necessarily suited to the person posting, or to our Healthcare System. We are covered by NICE guidelines in our NHS, and that means we start with the simpler options, and the most cost-effective ones, and then work up to more advanced treatments like MRIs etc if required.

We pay into our NHS, and therefore we expect to get good care out of it. At the moment our NHS is struggling after a year of Covid 19, our hospital beds used for non Covid patients, have been taken over, and our nurses & doctors redeployed into icu or other Covid wards. They have done an excellent job, but all this is filtered down the line to the care we would normally expect to get from our GP.

Your last sentence says “ you would change (probably without pausing)” if your Health Practitioner got on your nerves, or wasn’t giving you what you wanted. Again about what you do, but not really workable in our system.

I don’t want to go into further dialogue as we have already hi jacked the original posters question.

Take care.

GP. 😊😊

Dizzytwo
DizzytwoModerator

Hi there, yes hip and back pain can definitely be symptoms of fibro. But I do think you should be sent for an xray just to rule anything else out.

I also have severe OA and other things going on in my back. All of this can also cause the back and hip pain people suffer with. Maybe see another GP if it gets worse.

Furmummy
Furmummy in reply to Dizzytwo

I got an xray on my hip just before diagnosis and it showed nothing. I think I need an mri. I just feel like who am I to question a Dr..

You are YOU, you know your body more than anyone else, you have every right to question a Dr! I felt exactly the same previously but had I not questioned Doctors and pushed further when incorrectly diagnosed I wouldn’t still be here. If you feel something is not right, keep pushing until you find some one who will listen. You are your own best advocate. Thinking of you xx

Wow thank you, you are so right. Xx

You’ve got this Xxxx

Hidden
Hidden in reply to OutOfStripes

Yes , unfortunately some Drs take the easy way out and don't investigate when they should, I ve found sadly you have to push and keep on and don't give up till you get a result, , only we know how we feel , and of course the other problem with fibro is we usually look well which doesn't help, good luck

PP78
PP78 in reply to OutOfStripes

Absolutely, I agree with this. Took me 18-24 months to be diagnosed with FM (which I know if quick compared to some!). But I quickly realised that to ge the most (and what I wanted) out of medical appointments - GP, clinic and hospital - I had to “control” them or act like I was Chair in a meeting. Sometimes it wasn’t the GPs fault really, as they only have 10mins and might be seeing me for the first time. I stated printing out a one page summary, showing in quick bullet points, all my symptoms, background/summary, anyone else if seen or scans done so far, any questions I had, and what I wanted to get out of the consultation (ie a m referral, diagnosis, another scan). That way it gave the GP/medical professional all the info, and got my questions and needs across quickly at the start.

I got an MRI by referring myself to a physio who turned out to be some sort of senior in the profession. The MRI showed four compression fractures that an x-ray had failed to pick up (apart from the one that was angulated).

Yassytina
YassytinaFMA UK Volunteer

Morning, I agree with the others , differently ask to have an X-ray, I had a slight fracture in my lower back I didn’t realise was there and sometimes we can be doing more harm if not aware, also slight oesteoprosis showing up in one hip. So differently push to be checked at your local hospital xx

Furmummy
Furmummy in reply to Yassytina

I think I will. As this pain is not easing.

Yassytina
YassytinaFMA UK Volunteer in reply to Furmummy

Yes differently and take care xx

Hi Furmummy, I'm personally still waiting on final diagnosis but I'm also suffering lower back and hip pain along with several other symptoms.

Furmummy
Furmummy in reply to Jackapoo7

What tests have they done so far?

Jackapoo7
Jackapoo7 in reply to Furmummy

Up until now I've had x-rays, full MRI scan as they thought it was MS at beginning, full blood counts to rule out infection and inflammation all came back satisfactorily, hoping in the coming months to be referred to some sort of specialist for a final diagnosis.

Furmummy
Furmummy in reply to Jackapoo7

You must be exhausted with all the tests. But least they are investigating. What were your original symptoms x

Jackapoo7
Jackapoo7 in reply to Furmummy

It started 2 and half years ago with stumbling, and dropping things at work, work in a supermarket so you can imagine mess is was making lol, continually getting stabbing pain in different parts of my body mostly hands, thighs and shoulders.

Furmummy
Furmummy in reply to Jackapoo7

I had always had pains but just assumed everyone did. But it was the chronic fatigue at 1st for me that made me see GP. And if it wasn't for this group I would of just accepted the GP saying bloods are fine. Instead I asked for advice on a few forums and persisted with more tests.

I then mentioned pain in hands and hip, he sent me for xrays and RA test but both came back fine. Then he just diagnosed Fibromyalgia without any other test.

I moved gps as he retired, and I just feel unheard.

Hidden
Hidden in reply to Jackapoo7

Hi, I hate it when bloods come back " satisfactory" what does that mean, you'd think they'd either be ok or not ok LOL 😳

LoneEra
LoneEra in reply to Hidden

The trouble with bloods is they can be misleading. I have a type of rheumatoid arthritis that does not show in blood tests. Also, my inflammation levels always come back as “normal”. But if you look at the pattern of my blood tests, in a flare my levels are always at the upper end of normal - when in good times they are super low. So bloods are not necessarily as “conclusive” as many doctors think!

As for you furmummy, I would push for an MRI to see if there is inflammation in the hip joint. Coupled with the issue with your blue hands, I would definitely be asking for more investigations. Don’t feel like a burden!

Hi furmummy I'm exactly where your at. I get lower back and hip pain amongst a few other things and really feel unsatisfied that my hip pain hasn't been looked at enough. Im unhappy that I've been told its solely fibromyalgia because I really feel there's another cause maybe also or maybe entirely. Im not sure. Im currently pushing for an xray of hips and if that shows nothing and im not satisfied maybe an MRI. I just can't settle on the fact that its fibro thats causing my hips to be so painful. Mind you I do sometimes struggle to work out if its the actual hip or around that area so maybe thats why the gp made his diagnosis. I guess im saying the same as the previous posts its your body and if something doesn't sit well with you its probably for a reason. I hope you manage to find a solution that helps rule out something else or at least put your mind at rest but definitely pursue it. Good luck.

Heidi

Hi. I sympathize here. I had this excuse from GP for 8 years plus. I now find after insisting on an MRI scan that I have three bulging discs and advanced bilateral sacrolilitis possibly requiring surgery. It was only when I kept falling over due to immense pain and then couldn't walk at all I got angry enough to take it further. Once you have fibro diagnosed most GPs will use that to cover everything without further investigation. Trust your own instincts and pain level, they are lazy.

Furmummy
Furmummy in reply to Maud-ie

Wow, imagine if you didn't demand an mri?

Maud-ie
Maud-ie in reply to Furmummy

It's not like me to be assertive but so glad I was. Take care x

I too have pain in hips and back but not all fibro related MRI or X-rays mine is DDD And sciatica ... good luck

I sympathise! I know what pain feels like after two heart attacks diagnosed by A&E doctor as indigestion - three stents later.............(Ischaemic heart disease, angina etc. so NOT indigestion!). Also had Covid in January and collapsed and at one point the ambulance crew wondered if it was Covid or fibro!! I had fibro diagnosed finally in 2012 at Guys Hospital London but I have always had terrible back problems since I was a teenager - I am now 62. It got so bad and the pain so debilitating that I could not walk at all. (Pain worse than heart attack). The pain on moving was indescribable. Went to GP who told me it was fibro and "did I have a difficult childhood" schtick. I insisted on seeing a Rheumatologist. GP reluctantly referred me to Physiotherapy who immediately sent me for an MRI scan in October 2020. Consequently, I have three bulging discs, serious bone degeneration in my spine at L2-3 and L3-4 and L4-5 and bilateral sacroilitis with bone erosions and bone bruising which could need surgery. I am now awaiting an appointment with Rheumatologist at the end of this month. (Another battle commences?). It has finally dawned on me that you have to fight every step of the way. Do not be fobbed off or your life will be ruined. ps it's hard with fibro to find the energy to battle but you have to. Good luck and hugs

Furmummy
Furmummy in reply to Maud-ie

It is the strength of another fight but reading your story gives me the push to do it.

Good luck and strength to you x

It certainly is my main seat of pain, There are times when my spine wants to divorce my hips!

In April 2019, following two diagnoses of primary breast cancer in 2016 and 2017, respectively, and the usual surgery + treatment regimens plus the pronouncement that I was in remission, I woke one morning, unable to get out of bed. Or walk.

Consigned to walking aids for the next five months, I was denied the scans I requested. Time and again, my GP and my oncologist would insist I had - variously - a slipped disc, a frozen shoulder, fibromyalgia and depression! Not once was my plea for a scan acceded to.

Eventually, in intense pain that I cannot begin to describe, I became wheelchair bound. In August 2019, I was sent by my despairing GP, who had told me I hadn't been ill long enough to merit scans(!) despite my two previous cancer diagnoses and a family history of breast cancer (my half-sister passed away from metastatic breast cancer at the age of 42, leaving behind two growing children), to see a musculoskeletal specialist, who took one look at me and sent me off for an immediate MRI.

The cancer, now terminal, had spread to my bones and bone marrow and was everywhere: throughout my spine, my pelvis/hips, my sternum/breastbone, my clavicles, shoulders and shoulder blades - and at the base of my skull.

Fast-forwarding to now, I'm under palliative care. My hospice is on standby, as is Acute Oncology at the hospital. I have had to be admitted four times since my third - incurable - diagnosis, the first time for a month, during which I received high-dose radiotherapy and physiotherapy in an attempt to have me walk again.

I was admitted again with neutropenic sepsis: I didn't expect to survive that. Another admission saw me at threat of spinal cord compression. And the fourth was to receive infusions after blood imbalances.

I'm in intense pain every instant of every day, despite the pain relief (I'm on 39 tablets a day, plus liquid Oramorph and now Baclofen, too).

I suffer from bouts of intense nausea; my eyesight is terrible now; I am severely swollen from the waist down; my sleep pattern is shot; the neuropathy is excruciating, spasms and tremors waking me and denying me sleep or relief; I have distorted sensation in my hands and feet; my joints are intensely painful.

Every day is a struggle, every night a trial by fire.

I have a rock-solid family and supportive friends. For that, I am grateful: I know so many have to battle severe ill health alone.

I'm sure there's more, but I can't find the words at present. I did not expect to find myself in this position. I think back to the vigorous, vital woman I was just a few years ago and I see a stranger.

I do not intend to be alarmist, I must encourage you, though, to follow your instincts and insist on scans if your instincts tell you that further investigations are warranted.

I was not taken seriously, despite the compelling nature of the warning signs, and my voice was quelled.

It doesn't have to be this way.

Sending love and strength to you. X

I read your reply and am mortified at the struggle you are going through. My heart goes out to you and l feel ashamed of my inward, and often outward niggles about what can/can't do having suffered with fibro for many years plus arthrit6in type spine shoulders and hands. I wish l could take some of your pain and salute you in being so brave in the fight that you battle daily. I wish you a pain free evening and some respite from it all. Thank goodness you have a loving family and friends and send you much love 🤗💖

All of our battles/pain are equally valid and we are all a bunch of tough cookies. Love and strength to every lovely person who replies xx

You are formidable! This has definitely made me take note. Thank you for sharing your story. Love and strength to you ❤️ x

The remainder of my life - although I've not been told how long I have left, nor have I asked - is dedicated not just to increasing awareness of this insidious disease and possible symptoms, but also to encouraging people to ask questions that the medical fraternity/sorority does not necessarily want to hear.

Raise your voice! Voice your doubts! Don't be fobbed off with vague excuses and flimsy explanations. You are worth so much more.

💞

Lost for words to express my feelings for you. You are such a brave lady and I wish you strength and love for however long your future may be.

You are very kind. 🤍

Hidden
Hidden in reply to TheDrivenSnow

Hi DS, haven’t seen you on here for a while , just reading your posts shows us what an amazing woman you are , you have so much strength it’s unbelievable, We are all praying for you 🙏💐

TheDrivenSnow
TheDrivenSnow in reply to Hidden

MD, you are too kind. I don't feel particularly strong, but it annoys me (understatement of the century) when patients are considered mere statistics. We have beating hearts with sleeted membranes; we have mothers and brothers and sisters and fathers just like those who cite stats. Why do we matter less?

🤍

DS it's funny how we don't see our own strengths. People say I'm strong after my assault but like you I don't feel it I just am going through the motions.

But I agree I see your strength ❤️❤️ xxx

We do what we must because - well - what other options are there?!

My GP said to me, a couple of months into my third diagnosis, "I'm glad you're not doing what so many other people might have done in your situation: I'm glad you're not giving up".

I was genuinely shocked. It hadn't occurred to me to "give up". I'm not even sure I know what "giving up" looks like.

I do know, though, that I wish he hadn't planted the seed.

Too often, right from the time of our first diagnosis (assuming further diagnoses are forthcoming), we are made to feel vulnerable, the eternal victim. Too little emphasis is placed on - sensitively - empowering the patient instead, on reinforcing their strengths and their capabilities. When patients are made to feel like they're managing their condition in conjunction with their medical caregivers, they naturally feel far more in control. And a more empowered mindset results in better outcomes. Fact!

🤍

That is so true. Studies have been done on the positive reinforcement positive thinking on pain can have benefits. There's a book in it can't remember what it's called.

But a lot of practitioners don't look at illnesses like Fibromyalgia holistically and that you have to treat the body as a whole.

However with cancer unfortunately that is not the case but hopefully one day there is a cure it is a shame you may not be there (or I who knows) to witness it.

But we get 5 mind of a gp's time and a lot of fighting if their non believers.

What a thing to say to you though. I hope he or she never has to experience what you are and then be told that.

That's just ignorance. Xxx

The issue of time is often cited as an excuse by and on behalf of medics. True, there is generally a limited amount of time during which a GP, say, has the opportunity to interact with patients, but that doesn't mean that their archetypal (or perhaps stereotypical) bedside manner should fall by the wayside! It also doesn't preclude empowerment of the patient! Ultimately, the patient is then happier even in the face of a less than encouraging prognosis - and the medical caregiver gains an ally, a partner in the treatment process.

Sadly, my GP did not grasp that - or perhaps thought before he spoke. The repercussions of that on me as the patient were and remain unfortunate and endless.

🤍

Have you been referred to any of the counselling services that are available to patients with the diagnosis you have?

GPs and as shown in your case never act on prevention. They only know how to act when it's to late.

Do you feel you have the strength to make a claim about their negligence which has led to your prognosis? ❤️

I am undergoing Art Therapy, organised by my hospice. This combines counselling with various art forms - the visual arts and literature.

I did undergo formal cancer counselling following diagnosis #2. That was interesting! My counsellor ended up telling me her problems!

I have considered litigation. The issue is that - in my case - multiple agencies have been negligent!

- my (current) oncologist overturned my (then) oncologist's decision to go down the chemo route following diagnosis #2

- my GP surgery (multiple GPs were involved) failed to grant me the scans I requested when I lost the ability to walk prior to diagnosis #3

- my Oncology team at the hospital failed to grant me the scans I requested when I lost the ability to walk prior to diagnosis #3

Do I really have it in me to surround myself with negativity and aggression - with demonstrably limited success based upon similar anecdotal negligence - during these final years?

My answer is: I would prefer not to.

I need this time to be replete with affirmation and empowerment and teaching and learning. Fighting a system that is set up to win if approached conventionally is not my idea of success. We have already experienced this within the wider family.

No I totally get where you are coming from. Knowing personally how exhausting and emotional it is to take a massive business like the NHS (sorry I am assuming it is the NHS) on would be a waste of what valuable time you have left.

I started a claim against my employer nearly 2 years ago and I just received an email yesterday from my solicitor to say it is now going to court. This has been an emotional journey thus far and I have not got terminal cancer. So I totally understand that its not a fight worth fighting. Also its the Freaking NHS thats a huge fight.

Art therapy sounds good, do you feel it relaxes you while there.

And oh yeah I have had a counsellor like that too. I think counsellors like that go into it so they can share their woes to unwilling clients.

That does sound like hard work - and an inordinately long journey with no real certainty of a successful outcome, although I wish you the very best.

What I enjoy about art therapy is its flexibility. Nothing is off-limits and so there are times when the dialogue progresses in completely unanticipated directions.

Maud-ie
Maud-ie in reply to Furmummy

To you too! Gather your strength and take the 'experts' to task. Good luck and love

Thank you so much everyone for your advice. I will be phoning tomorrow morning to start another fight.

Hi, just saw this, I have fibro. It seems alot of us have back issues hence nerve pain. I am currently having to use 2 sticks to walk due to old slipped discs playing up. Also migraines seem to be linked. It's great when the pain goes 🙂, stay happy. X

Well yes, you can get pain anywhere and everywhere with fibro, but personally I think doctors should always look into any new pain first to rule out other possible causes before putting it down to new fibro pain. In my experience, once you have been diagnosed with fibro, doctors just shrug their shoulders and say, it's just fibro, and that is very annoying.

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