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
🙏 🙏 🙏