Visit to the Rheumatologist PMR not the culprit - PMRGCAuk

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Visit to the Rheumatologist PMR not the culprit

EdithWales
EdithWales

I saw Braveheart this afternoon, he has not been well, too much NHS stress. I tried to lighten his load by my jolly banter and more importantly his Christmas bottle of champagne. I quickly slid over that I had defied me by not taking the Asoprazine and he didn’t seem to mind because my inflammatory blood markers are completely normal. I told him about my screaming legs, he examined me thouroughly and said I had some restricted hip movement. He thought I could have Osteoarthritis and said it was definitely not PMR, I also skated over my mishap with the roids. I went downstairs for an x ray that showed three spinal bones are affected , the screaming pain is fasciitis, a reason cleverly suggested by PMRO and Dorset Lady sometime ago. What I am getting is referred pain in my hips and legs. I have to be grateful I have a diagnosis and more so that PMR is not the problem so I can continue to taper however this Osteoarthritis is a new one for me, he says the only treatment is analgesia, so medical cannabis here I come. Should go down nicely with the champagne.

I shall raise a glass or three to you when I am sailing the high seas at Christmas.

Thank you for all your support and being able to laugh with me.🥂🥂🥂x

36 Replies
oldestnewest

Sailing the high seas! 🤣🍸🍷🥂🍹🤶

EdithWales
EdithWales in reply to HeronNS

Yes Southampton to the Canaries in a suite with a butler who lovingly keeps the drinks fridge full, 12 nights of total and disgusting dependence and I don’t care🥂🥂x

Rose54
Rose54 in reply to EdithWales

Have a great time

I will wave as you pass the Isle of Wight and be green with envy

EdithWales
EdithWales in reply to Rose54

Thank you 🥂🥂x

I’m not properly awake yet but I must confirm: you are not leaving us are you????!!!!!!!!

Never! Still have PMR and tapering to 9 mgms The Osteoarthritis is just a little extra sent to try me 🥂🥂

Cos we neeeeeeed you xxxx

And I need you. This so called journey would have been intolerable without you 😇🥂😇

Very relieved. Can’t do without our Edith xxx

I love your name. Edith is FABULOUS and she was my favourite Downton character. Wales is so .....Royal!!!👑🎩

Really! I hate it and dropped it years ago, it sounded so spinsterish. I am known as Rovena, my second name, far more me

Take care

🥂🥂

Why-ever did you use “Edith” then? If “Rovena” is “you” we have been writing to the wrong person.

😂😂😂😂. 💐🍾🍸

It was nearly 5 years ago and I thought I would be anonymous, now I am past caring. I am glad you like Edith and of course I am Welsh 🥂🥂

Oh very pretty. But I do love EDITH. My nana was Harriet Beatrice. Xxxx

PMRpro
PMRproAmbassador

Fasciitis can be dealt with and got rid of - what did he suggest?

EdithWales
EdithWales in reply to PMRpro

Paracetamol and Hydotherapy. I will have to seek out the latter as there is nowhere locally. I am not sure what I feel about the new diagnosis, I knew where I was with GCA/PMR What treatment are you thinking about? 🥂🥂

PMRpro
PMRproAmbassador in reply to EdithWales

I have annual sets of sessions of massage therapy which include manual mobilisation of the hardened muscles and the trigger points. It releases the cytokines in the fascia and muscles that are causing the inflammation and pain. I sometimes feel a bit "PMR flare-ish" the following day but it soon passes, especially with gentle movement and drinking loads of water.

After New Year I will be seeing one of the Pain Clinic specialists here - it was the wonderful specialist there who identified all the inflamed and spasmed muscles in my back originally some 5 or 6 years ago and then patiently worked on them with steroid injections into the trigger points (pairs on either side of the spine in shoulder muscles, about rib level and in the lower back) to reduce them and finally just about eliminate them, and also manual mobilisation techniques,

They also use a technique here called "quaddeln", known as needling in English and sometimes something similar is found as intramuscular stimulation. Quaddeln comprises subcutaneous injections of saline or lignocaine, sometimes just insertion of the needle, forming blisters under the skin (the source of the name) and somehow these stimulate the muscle to heal itself. Yes,it sounds very alternative but here it is commonly used in mainstream medicine for pain relief and it really does work! It is fleetingly very painful but almost every patient comes back and requests it simply because it provides such good relief! I have found links for intramuscular stimulation in the UK and a friend was sent by one of her pain specialists at Addenbrookes - she too swears by it. In the UK I found Bowen therapy helped my myofascial pain - but it has to be the right therapist, the one I found here is a bit arty-farty about her Bowen, unlike my lovely ladies in the NE who called a spade a shovel!!!

I was told my low back pain was "spinal wear and tear" and I'd have to live with the pain, that was at barely 60 and I couldn't walk or stand for more than 1/4 hour at a time. It was a year or so later I was admitted to hospital, unable to move without knives twisting in my low back - dealt with as myofascial pain syndrome it was sorted and I am practically pain free providing we attack it quickly when it reappears. Leave it and I will need to up the pred dose as that also helps - for various reasons I didn't get in in time this year, that's why I am heading back to the Pain Clinic. But here the Pain Clinic looks into the causes of the pain and deal with them if it is possible - CBT and stuff comes much later.

I'd go so far as to say paracetamol is useless - no antiinflammatory effect at all.

EdithWales
EdithWales in reply to PMRpro

Thank you that’s very helpful. Having resisted lying in my bed feeling sorry for myself I decided to take control. I sourced the Hydrotherapy pool not far away, if I pay it’s reasonable but I checked and the insurance will pay. Have an appointment for an assessment tomorrow. After a course there are group sessions which sound fun. I will start with that and then seek out 🥂🥂xwhere I can follow up on your suggestions

PMRpro
PMRproAmbassador in reply to EdithWales

Forgot to say - it isn't entirely true that PMR is not the culprit. The cytokines that cause the problem in MPS are the same as the ones that cause PMR - just they are in the trigger points and fascia rather than systemically (non-published study showed it) and MPS is found more often in patients with PMR than patients without PMR.

A good sports massage therapist is a good start - think of the stuff they do to tennis players and they rise from the half dead!!!!!

EdithWales
EdithWales in reply to PMRpro

Of course, both PMR and Dr H are the blame for everything.

I am looking forward to going in the water, I said to the physio that I am still after the Medicinal Canabis, she might find a very giggly, relaxed group of ladies in the pool 🥂🥂

PMRpro
PMRproAmbassador in reply to EdithWales

I certainly found the aquafit I did pre-pred combined with the Pilates that was then possible did keep it all at a manageable level...

Bravo you brave little Edith you. I am in awe as I sometimes just give in to the DF and sheer slog of getting by. So I admire you so much xxx

Daisychain12
Daisychain12 in reply to PMRpro

Yes but I find it helps a lot with the flu feeling of fibromyalgia cxxx

PMRpro
PMRproAmbassador in reply to Daisychain12

What is "it"? I can't tell which comment this refers to.

Daisychain12
Daisychain12 in reply to PMRpro

Sorry PMRpro. Paracetomol xx

piglette
piglette in reply to EdithWales

If I won a lot of money on the Lottery I would set up a charity to ensure that hydrotherapy pools were available everywhere in the country for people who needed them.

PMRpro
PMRproAmbassador in reply to piglette

I have heard that one of the arthritis charities funded a pool in the NE - and refused to allow PMR patients access as we don't have arthritis...

EdithWales
EdithWales in reply to PMRpro

That is shocking. It should be based on need not diagnosis🥂🥂

piglette
piglette in reply to PMRpro

PMR used to be on the Arthritis Care website so one would assume it was a form of arthritis! Lupus is also considered a form of arthritis.

EdithWales
EdithWales in reply to piglette

The more I think about it, that is ridiculous. I remember in another life fighting with MacMillan. They would only provide palliative care for people with cancer but dying is dying. They eventually conceded and everyone is included now 🥂🥂

EdithWales
EdithWales in reply to piglette

Quite 🥂🥂

That’s magnificent piglette xxx

Here is my remedy for unrelated to PMR pain. I still don't believe I have PMR and this has helped tremendously for the other aches and pains of aging.

Cover yourself and your kitchen area and wear disposable gloves. This is an about recipe--nothing will go wrong if you are not bang on the measurements:

about 4 ounces of tumeric root ( preferably from Peru over China)

about 3 ounces of ginger root.

You can peel both of these which , if you are going to do that, I suggest you do under water -using a spoon may be easier than a peeler. I just wash mine well.

Throw it coarsely broken into the blender with the juice of 4-5 limes.( fresh limes--not bottled juice) I add one cardomon for taste. Add a can of coconut water ( about 12 ounces) and a cup of plain water. Blast it in the blender until its smooth and then pop it in the fridge to sit overnight. In the morning taste it and add as much maple syrup or liquid honey as it takes to make it palatable to you. Strain it through a strainer and cheesecloth into mason type jars. Take 1 1/2 ounces in the AM on an emply stomach ( small espresso cup). You can add water or add tea but I just shoot it. It very much helps my inflamation and pain levels I call it a Tumeric-Lime Elixer ( makes it more witchy woo)

EdithWales
EdithWales in reply to Celebrant

Thank you. I make vegetable juice that includes ginger and take Turmeric tablets. They don’t seem to make any difference but maybe they are in insufficient quantities and the Turmeric is not fresh

I will try when I get back from the cruise

Take care

🥂🥂

just remember to cover everything and if a towel gets a spot of tumeric on it--soak it out, don't just throw it in the washer--or your pretty pink panties will turn a shade of peachy lime you had not counted on!

EdithWales
EdithWales in reply to Celebrant

I never wear pink but I will be careful. I had my raw ginger this morning but it made no difference. As I said I will try when get back

Thanks

🥂🥂

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