The Journey Continues…

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My journey of discovery to find health and well~being continues.

On Friday 31st March I received a telephone call offering me a cancellation appointment to see the rheumatologist instead of having to wait ’til my previously arranged appointment of 22nd June. Obviously I jumped at the chance and my appointment was booked for Tuesday 4th March.

Being a noodle head and very forgetful I made sure to be prepared prior to going into my appointment  ~ I had previous blood test results, medications, past medical history and synopsis of symptoms. I cannot even begin to express how nervous I was in the run up to the appointment. So much was riding on it, trying to find an explanation for the constant joint pains and weird ankle swellings and tightness. Thankfully, I didn’t have time to stew in the waiting room as on arrival I was called in immediately (and I was a good 15 minutes early too).

The Consultant was absolutely lovely and immediately put me at my ease, being friendly and relaxed which helped me relax a little too. He was thrilled with my bullet point information and asked if he could keep them. He discussed my issues with me and then carried out a physical exam.

First off, not at all surprising, he confirmed the hypermobility diagnosis ~ I am especially hypermobile in my knees and elbows. He checked all my joints and reflexes and informed me he had never seen anyone in all his years as a doctor with little squishy swollen pockets in their feet/ankles like mine and that the swellings were interestingly over my tendons.

After all the shenanigans of the physical and I was once again dressed and splints back on we had a chat. First off he wanted more blood tests looking more specifically at immunological issues, as well as more complex rheumy tests, along with U&E’s and liver function tests for good measure. As for my breathlessness, all appeared to be well with my heart on listing with his stethoscope but just to be on the safe side I’m to have an appointment made to have a echo-cardiogram to ensure that no floppy valves are at play. my M.E. diagnosis still stands, along with the Diverticulitis, Hypermobility and Depression (deep joy) but he feels something more is at play and accepts yes the hypermobility could end up being the cause of my joint pains but not the pockets of ankle swelling and so that needs investigating.

Unfortunately, as it stands right now, I can’t have more pain relief as until we know the cause of the pain it is difficult to know what to prescribe for relief. Plus being a sensitive soul he didn’t want me reacting to unwarranted medications.

It has been left that echo-cardiogram appointment to be scheduled for me and that he will write to me, my GP and my ME Clinic once all my results are in and plan the next step from there. Meantime it was advisable that I try to shift some weight as that would help to ease the stress on my joints, to continue with the splints and to maintain gentle daily stretches and mobility as much as possible. I naively had hoped for a diagnosis and treatment plan to have been found there and then. Unfortunately life doesn’t work that simply and the doctor is looking at possible causes as being either; autoimmune disease, hypermobility EDS causing the pain, cancer (but very unlikely), some kind of rheumatoid or arthritis issue or that my body is simply attacking it’s own immune system for some reason. At the end of the appointment I was given blood test forms and directed to the blood clinic where the necessary volume of blood was withdrawn and send away for analysis.

This appointment has left me feeling a little grumpy and frustrated on the one hand and pleased to have been seen and knowing that I am being assessed for all possible causes on the other. Funnily enough ~ going onto my medical records online via my GP website I notice that they have marked down for me to have repeat blood tests in a years time to monitor my kidney function ~ as the last test results were indicative of stage 2 possible borderline stage 3 kidney disease. However, the Consultant had also ordered a repeat U&E test which I had along with all the others on the day.

Being a all or nothing kind of person I have taken on board what the good ol’ doctor has said and commenced a no fat, no sugar, no dairy, no alcohol, low calorie diet. I am on a mission to lighten the load on my poor old joints as soon as humanly possible. As I write this I am on day 2 of my new regime and honestly I am not hungry and having to push myself to ensure I consume enough calories. The switch to milk free coffee isn’t too pleasant as I like it milky usually ~ but it’s not undrinkable either. So being a coffeeholic I am sure it won’t take long for my taste buds to adjust. As quite frankly, I am like a demon possessed without my daily morning caffeine fix!

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So my current body is going to be trimmed down and reduced hopefully enough to impact on my joints and reduce my pain. Currently I look like this ~ and I apologise for the tightness of the clothing in the sight I am posting below, but I didn’t feel up to a bra and panties style photo so went for the skin tight leggings and vest top combo instead…

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For all you Terry Pratchett fans you will understand when I say I more like the super curvaceous (I do not like to use the f word) Nanny Ogg than the ram rod straight up and down Granny Weatherwax!

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So if you can, think of me when you eat that next doughnut or cake and have a bite for me, meanwhile…

So I am leaving you whilst I dig into my sugar free raspberry jelly with suitable jelly eating face and gusto. Also, hopefully next time I blog it will be to report that I’m a wee bit lighter and hopefully my joints will respond by being less painful and grumpy with me. Perhaps even by then I will have further news regarding my health journey of discovery ~ a diagnosis for the pain would be awesome and a treatment to take it away even better. Hope springs eternal and all that.

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