UPDATE; Overwhelmed; unbearable pain with a 'cascade of subsequent pain', can't figure out anything anymore? Does anybody else get this?

[Poppy_the_cat]

I would like to say a huge, heartfelt thank-you to everybody who has replied to my post in the last 48 hours.

The incredible expression and wave of care and positive vibes has been humbling. In return I would like to give EVERYBODY a big hug of sincere gratitude. Every single reply has helped me to hang on because the last few days I really have hit rock bottom, beginning to question the reason for my existence.

Since writing this initial post, this strange, unexplainably acute pain response has once more progressed; just like it did the last time I gave blood last autumn! The same 'ghost pain' has now manifested itself in my OTHER arm, the left where blood was draw last year! The familiar sharp aching pain as if the vein had just been pierced! It's almost ridiculous just trying to explain! So now I have sharp, piercing persistent waves of pain in both elbows at both blood draw sites?

Having recently seen how excruciating my own mother's trips to A&E were lasting 17 hours the first day/night and 13hrs the second occasion; with her first trip only resulting in her being sent home on painkillers and muscle relaxants. It was only on her persistent second trip that she saw different 'interested' Drs that she was effectively diagnosed with PMR. I couldn't cope with these 'waiting times" right now. It's out of the question. And my fear of being forced to give blood is just something I cannot even contemplate right now...

So I decided to communicate with my Brilliant nurse practitioner directly instead. Attempting to 'message' over the practice website just didn't work - the messages can only be a few lines long and get answered with 2 or 3 days, so I elected to write a full list of symptoms for her to look at in its entirety instead of a 'sound bite'. This is what I listed in my letter.

I also adopted a poker bluff and "threatened" to go to A&E if she couldn't help me!

My Letter;

"Having had a diagnosis of Fibromyalgia for over 20 years I can definitely say this is NOT simply explained away as such, it's most definitely 'something else'.

* Severe unexplained back pain came on last week. I am unable to stand for more than 5 minutes at a time maximum.

* Excruciatingly painful right hip joint. So bad I can hardly get out of the car, I stagger and I limp dreadfully.

* Nausea and loss of appetite.

* Severe headache across forehead - around my head like a tight band.

* Sharp acute pain under my jaw, which follows on into my temple which carries around to the back of my head and my neck. I even have a sharp pain that is like a 'numbness' down the length of my tongue on the same Right side!

*Excruciating stabbing pain in my shoulder at the top where it meets my neck.

*Very painful armpit and pectoral muscles.

*The pain from my back radiates around into my ribs in the front, almost as if I've been kicked.

* Severe excruciating pain in my left eye. Stabbing. This pain radiates into my left temple. It is totally impervious to any treatment with an ice pack.

*I am unable to take nurofen or codeine or any painkillers.

*I have the strangest feeling in my major muscles; arms and thighs, it almost feels like a toothache or a cramp in the muscles and they feel like they are 'burning' at times.

*I am also getting chills and shivers. I can even feel like I have a fever when I'm in bed and I wake up in the morning.

*Extreme fatigue during the day especially the morning.

*Unsteady on my feet; positively flakey.

*Thumb sockets extremely painful, can barely hold anything.

*Painful sensitive scalp.

However....

NB.

Some of these symptoms ie/

1 severe back pain,

2 increased hip pain,

3 jaw pain,

4 temple pain,

5 headaches were ALL in existence PRIOR to the painful blood draw.

Though I had bad shingles in January which is when the hip joint started to become a problem and one can make assumptions that the issue was 'internal shingles'; as shingles seems to favour the hip joint, maybe it wasn't??

It is not inconceivable that one can be ill with more than one thing that shares the same symptoms simultaneously. Then, the consequences of the blood test on top, bringing my hyperalgesia alarmingly to the forefront, I fear its almost acting like a 'red herring?'

Clearly there is so much more going on with me. I just seem to be a battleground of Inflammation issues.

These bullet pointed symptoms that I have listed are seriously affecting me and not allowing me to function at all.

The eye pain in particular has literally been crippling.

I am still waiting for the blood test results for my iron levels and vitamin B12?

I don't want to resort to going to A&E but I need help please. "

I wrote the above letter and had it delivered at 4pm. By 6.30pm I received this answer;

"I have spoken at length with Dr As- -n about your symptoms (thank you for your letter as well which is now saved to your notes)

I forgot to add that your Ferritin / Folate levels are satisfactory - although on the lower side of normal and suggest a good multivitamin which will help bring those levels up a little.

In the meantime what we are going to do is get you in for a double appointment with Dr Br- -l so that he can have a chat with you (great that you have provided us with this sheet) and also to discuss Neurology or possibly a referral over to a Geriatrician (there is actually no specific age but most patients are over the age of 75, so it is not to do with age at all in this instance) - the reason for this is that they are generalists in medicine and can assess you holistically and look at all your symptoms and assess you from a secondary care point of view. Referrals to Neurology / Rheumatology etc only assess symptoms of that speciality. I do think that this is a good idea due to the many symptoms which you are struggling with, but do have a think and I will in the meantime sort out an appointment for you to discuss further. Are there any times that we need to avoid at all?

Kind regards

F "

I feel this is a step in the right direction.

How long all this will take I don't know. It worries me. I'm just hanging on.

My concern is, that with the myriad of issues that I'm dealing with, it's probably going to take a lot of time to unravel and maybe the 'main issue' I'm dealing with might get lost in translation so to speak?? Seeing a Geriatrician?? Hhhmmm I'm only 59 but right now feel like a 159 so maybe that is the path to take? There seem to be no hints of PMR? Not that I am wishing to be diagnosed with PMR by choice! I'm just very grateful in these stricken times, to actually get a double appointment at such speed and face to face... So maybe my old fashioned, hardcopy, bullet pointed letter has had positive results?!

Thank-you again to everyone.

I will keep everybody updated in the hope too that it might help others.

Poppy the cat

🙏 🙏 🙏

[Nextoneplease]

Hello Poppy_the_cat 😊

Thanks for such a great update/feedback. Your letter to the nurse certainly seems to be yielding results and I think her explanation that geriatricians are generalists who can look at things holistically, is a good one.

Do keep us in the loop. Meanwhile, thinking of you and sending hugs 🤗xx

Nextoneplease xx

[Poppy_the_cat in reply to Nextoneplease]

Thank-you 😘

[Bcol]

Hi Poppy_the_cat, thanks for the feedback and good to see that a good old fashioned letter seems to have produced some results regarding further appointments. So further hugs, hang in there, there's always someone here if you need to talk and hopefully these appointments will come through soon.

[Poppy_the_cat in reply to Bcol]

Thank-you 🙏

[Seacat30]

Well done. Fingers crossed that your appointment will be soon. xxx

[Poppy_the_cat in reply to Seacat30]

Definitely 🙏

[DorsetLady PMRGCAuk volunteer]

Hi, and thanks for update.

Seeing a Geriatrician?

That’s just a generalist doctor for the over 50s, so hopefully will have a more overarching view of you rather than a specialist would.

Hope they do.

[Poppy_the_cat in reply to DorsetLady]

I reserve my judgement... Although it sounds good logically on the one hand, I'm unsure if I'm honest... I absolutely loath that offensive comment "ah well, it's wear and tear!" To which my reply is simple "I haven't worn or torn enough!"I'm a little apprehensive... It could be another phase of just fobbing off.....hhmmm

[DorsetLady PMRGCAuk volunteer in reply to Poppy_the_cat]

Well you won’t know until you see them…but as you say it all too easy for some to blame your age…

[Poppy_the_cat in reply to DorsetLady]

Absolutely...but then I had that silly phrase trotted out to me when I was in my late 40's!!!!

I'm trying to make head and tail of my blood test results, but on a phone it's impossible... Some of the comments I don't agre with, so when I can pull myself together I will attempt to post, hopefully cutting and pasting... Not to make mistakes, as I would much appreciate any comments.

Thank-you

[DorsetLady PMRGCAuk volunteer in reply to Poppy_the_cat]

please do post test results…

As for age, my son who is 51 complained the other day that he hadn’t recovered from a stomach bug as quickly as usual as being down to age. Needless to say I put him right on that comment !

[Poppy_the_cat in reply to DorsetLady]

Well done you!!!👏👏👏It's this stupid mantra that gets drummed into us subliminally.. . Essentially anybody over 30 is 'old' 🙄🙄🙄

What a total nonsense!

Well they use teenage models to advertise anti-wrinkle cream!!!

[PMRpro Ambassador in reply to Poppy_the_cat]

Unfortunately, after about 50 the body does start to react to many things differently and the Geriatrician or Specialist in the care of the older person has a better understanding of these changes and their relationship to medical care. Sometimes they are refered to as specialists in frailty which has a specific medical definition.

[Rachmaninov2 in reply to Poppy_the_cat]

I agree, I felt exactly the same when told it’s down to wear and tear. I was also told “you’ve had a good life”!! I wondered how he felt qualified to comment.

[Poppy_the_cat in reply to Rachmaninov2]

Guaranteed to make your blood pressure 'ding the bell at the top of the pole' ... I have to seriously take control myself to prevent an instant display of momentary Tourette's and not turn the air blue with expletives! I have an image of myself as Astérix transforming into Obelix in the blink of an eye!!! The words 'suppressed rage' don't even cover it, the sheer barefaced impudence!!!!😡🤬

I must say as a total aside that listening to Classic FM is not only soothing but uplifting and AA is such a hoot, his impish sense of humour is just as much a delight... Rachmaninov, Strauss 1 & 2, Chopin, Ravel, Mozart, Tchaikovsky, Beethoven, Bach, Einaudi....the list is endless.... Or as I just typed 'the end is listless!' 🤣🤣🤣🤣 Only God knows what a Freudian slip that was!!!!!

[Rachmaninov2 in reply to Poppy_the_cat]

Haha, I love your sense of humour. I must admit I felt ‘taken aback’ so said nothing, but I won’t forget. On reflection I consider the comments to be patronising.

Classic FM is on all day and evening here, I particularly like Margherita Taylor and Smooth Classics. Her gentle voice coupled with the soothing music help me to drift off. Among my favourites are (surprise) Rachmaninov, Shostakovich, Clara Schumann, Chopin. As you say the list is endless. Your Freudian slip is so funny 😂😂 many a true word is typed in error.

I like to find out about the composers, what they looked like, the fashion of the day etc. I find it adds another dimension to the music.

Happy listening.

[Poppy_the_cat in reply to Rachmaninov2]

Absoly agree. I adore Tchaikovsky and so read up on him. I had no idea he was gay and cannot begin to imagine how difficult his life must have in Russia at that time, but then maybe the difficulties he had to endure were part of the magnificent opus he produced. In fact one of his pieces that I can never remember the name of, is so inspired it could only have been written by somebody who was truly in love. It's so moving.The Russian Conservatoire establishment criticised his work for not being "Russian enough... It was far, far too European!" Such inward thinking clearly appears not to have changed much if one considers certain tragic current world events....

[Rachmaninov2 in reply to Poppy_the_cat]

I listened to the Adagio lamentoso this afternoon, really beautiful.

Apparently they even renamed French bread due to the European influence.

[HeronNS in reply to Poppy_the_cat]

Hopefully that won't happen. I've heard that some doctors think that older patients are much more interesting than younger ones because each of us is different and they view our complex issues as challenge. I expect a geriatrician chose that specialty because they are indeed interested in the complexities of the older patient.

The wear and tear statement is so trite and unhelpful. So, I was told, your knee is arthritic, it's bound to give you trouble at your age. But, I reply, x-rays show that my other knee has worse arthritis and it doesn't hurt, although it's the same age as this one.

[Poppy_the_cat in reply to HeronNS]

What an excellent example of how unpleasant and patronising such statements can be to those of us who are suffering.... And an excellent example of wit on your part to demolish the spurious cheap statement! 😉

[MiniSpec]

Interesting thing about being told it's all down to ageing. I suffered for many years with sleepiness in the middle of the day, and it got so bad that once at a client's site I nodded off for ten minutes completely unaware of how, or why. The company I was working for told me to get the problem fixed and sent me to a private clinic in Cambridge. They did various tests and took blood samples, etc. At the end of it all they said that it's just down to ageing. I was 54 at the time, and didn't think much of their diagnosis, especially as I was told I had to pay for the consultation.

Soon after that my daughter suggested my problem could be caused by excess Candida in my system, and she advised me to take Acidophilus and Caprylic acid. Guess what, she was right! The sleepiness stopped within a week or so of starting on the supplements, and whenever I've had problems since then I've taken the supplements again.

So it would seem that a 19 year old girl had more nous than a medical 'professional' when it came to diagnosing such a simple thing as daytime sleepiness. Furthermore, she was a student at the time, not a medical student I might add, but a student of graphic design and marketing, for which she eventually ended up getting a first class honours degree. So despite it not being one of her fields of study, she nevertheless had the common sense to read up about possible causes of my problem, and came up with the correct diagnosis. If only the 'professionals' had done the same!

My problem had nothing whatsoever to do with ageing, but everything to do with an imbalance of the Candida fungus within my system. As such I don't hold doctors, or even specialists in very high regard since then, and I'm happy to question everything they say if necessary. After all, we're paying their wages, so they are in effect public servants, our servants!

[Poppy_the_cat in reply to MiniSpec]

Hi MiniSpec!!I'm feeling absolutely dreadful right now but I feel I have to reply to this!!

Well, the simple tools your clever daughter used are the necessary entry level requirements that doctors should innately possess to do the job!

My grandfather was an eminent and truly excellent doctor of the 'old school'. One of the things he always used to say was that his capacity to 'listen to what the patient had to say' was vital to understanding was what wrong. He never made assumptions he 'listened & observed!' Sadly, he passed when I was 24 and it was only after that, that I saw a mainstream Dr for the first time and it was a very rude awakening! I often think of him and wish he were still here.

My own professional field required similar capacities; acute observation, great sensitivity and reasoned deduction. Your daughter also has this ability to apply herself to a problem, reason it out and research the possibilities, party because her goal was to 'fix' you.... And she did, which when you think of it is rather embarrassing for the other parties concerned!

Unfortunately I can see that because the general approach in our modern western medicine is that of drug/pharma dominance, the primary approach will always be to 'medicate'. Instead we should rely more on our observational skills and deductive powers to theorise about the health issues we face and medicate second. It seems to me, be it time constraints, assumptions, impatience, political agendas or whatever you want to label it, we are primarily exist to be medicated (because it makes money) rather than 'fixed'.

Your correct diagnosis of Candida (which can kill!) was too easy, it wasn't 'sexy' enough so it wasn't even considered.... So failing to be able to give a diagnosis the 'old age' card was pulled.... The huge rug that gets everything shoved under it!

I also had a brush with Candida. It's a monster that lurks within us, that like you say, it needs to be kept in check. It too has its role to play in our gut biome balance, but with huge use of antibiotics, direct or indirect in our food source, it can be affected and encouraged to grow out of hand into a serious problem. I had toenail fungus for 25 years. After constant useless applications of the transparent nail polish thingy, on and off without proper results, I gave up. It was the word 'fungus' that eventually twigged for me . I followed a similar regimen as you did. I also went on a total sugar starvation diet, because I found as I started to 'get better' my cravings fir sugar which I've never really had, increased dramatically. It seems the Candida beast can actually make us crave sugar if it's deprived! So eventually, becat tie nails grow very slowly... I started to see new, proper healthy toe nail growth emerge from the half moons on my toenails! I hadn't seen that in almost 25 years!! Joy! I was thrilled.

A healthy gut needs a tamed Candida fir sure!

So glad you solved it with your clever, intelligent, listening daughter! She will doubt apply her same gifts in her chosen profession to undoubtedly be very successful I am sure!

I will not prejudge... But I am wary and will deal with this proposed geriatrician open-mindedly but will reserve the right to disagree if needs be.

Thank-you fir sharing such an interesting insight.

Poppy the 😺