well, long time no see. A little update and some advice please

[Karm]

Well, it's been a while. A very very long while.

So for a little update within the last 4 years that I think I last posted I have had a baby 🫣😨. About 19 months old now. A welcomed surprise shall we say. Didn't even think it was possible, but hey, our bodies always do their own thing.

I had a (symptoms wise) good pregnancy. Infant being pregnant took all my pains etc away. I only really suffered with the normal pregnancy aches and pains which to be honest were not even that bad. I was obviously high risk and toy utter shock and dismay a geriatric pregnancy 🤣. The cheek of it. Had many appointments, tests etc scams to make sure myself and baby were on the right track.

But although it went relatively smoothly was induced early for mine and babies health and safety, now all those wonderful hormones and gone I'm kind of back to square one. I was in alot of pain and having flare ups etc before so that's all now creeping back.

I have decided to try and see about the medical cannabis stuff and found a clinic they have said yes to prescribe me, got a little shock at how quickly they said yes and how fast said prescription was authorized and produced lol. For me personally it's quite expensive and this is just the first prescription. Stil have to go back in about a month for a follow up consultant and another prescription etc. I just wanted to see if anyone in the UK mainly has been doing it and if anyone has managed to get it on the NHS or anykind of help with costs etc.

I have not done my script yet but they have started me.off on a strong dose that needs to be started at night as it does make you drowsy and when uses to it can take in the day.

Again looking for some up to date advice Info as it's been a while since I was last here and alot has changed since then.

Sorry it's soooo long. I can be very long winded. But hope you catch my drift.

Thanks

Karm

[KnitSewPurl]

Hi I was offered medical CBD but turned it down as felt that I will not be able to function or might hv reaction to it. They also tried to switch my other meds various meds which I declined . And my GP still did so I had to phone my GP up to complaint about it to hv it put back to my normal regime. My issue was my hip and back they were claiming fibromyalgia which is not.

I am seeing a physio under the NHS now which the MSk spinal stopped when they assess me initially ,yes not impressed.

You will to show that your pain meds in stages before you can go on CBD on NHS they will asses you and decide what is best . . That is if you have tried all the various pain meds and that you have taken it up to the max to the level . The next thing they will refer you to the pain team they are they ones who will see you have a chat and authorised. It is a long process. It is the consultant that will authorise it .

It is quite a long process.

As for my painkillers : I am on tramadol, paracetamol and arcoxia ( for my lupus) - this one has help alot .it is an anti inflammatory drug about like ibuprofen but stronger.

So if you are seeing a rheumatology you might want to consider looking at your pain meds and reviewing it again

[Karm in reply to KnitSewPurl]

Hi, thanks for the replyYes I have been to hell and back with all the different medications. Been to the top in terms of dose etc. been through pain clinic atleast 4 times. Before pregnancy they said there was nothing else they could do as has exhausted all avenues with trying different meds, doses and physio.

I'm a little back to the start as the now have to try everything again. But I'm not really happy to be going back on a bunch of meds and stringing that all out again. What's arcoxia? Haven't heard of that one before.

I have a Rhuematologist app today and will see what she says. She isn't great with going further I feel and I may need to see what my other consultant says and if their able to do anything.

I just want some kind of relief after trying so many different things.

Thanks

[KnitSewPurl in reply to Karm]

Arcoxia was it's trade brand name before it was taken over by its drug which it is now called Etoricoxib. This is the drug that it was originally traded and I was originally given when I first started on it . I started my dose on 90mg for a very long time had on it for several years before I had to taper it down to 60mg but it kept flaring up my SLE. So I had to keep putting myself back up to 90 mg to stabilise the pain flare up for a week or so then taper it again . I am now stable.It basically helps with the joints inflammation. But I don't think it helped with the muscle inflammation much at all. Sleep was the only thing that helped for me until I sorted out my diet.

What I want to ask is are you on gluten or dairy? These can flare up your immune system. So ,I would suggest you try diet and see if you can stay of gluten especially anything with wheat base , barley, malt, also garlic and mushrooms tomatoes , these are key elements of items that can cause inflammation to our bodies .

When I stopped gluten and dairy , especially gluten all inflammation of my body just cleared up it took about a week or so to totally clear out of my body . Even though the celiac test was neg I have kept my self off gluten and dairy. Each time I consume some my body react to it. So it is very much an intolerance.

[KnitSewPurl in reply to Karm]

Well I am afraid they will you to try again a bunch of meds as you just came out of pregnancy and you have not been in pain for a while like 9 plus months which could be due to hormonal . Rule of thumb is unless you have tried everything at the current moment .

As for me , I could not have any other drugs due to multiple allergies and it narrows my options as to what I can really have.

What I would like to know is have you tried cutting out any gluten or dairy in your diet ? Or garlic. Or mushrooms or tomatoes?

Like many lupus sufferers we found that gluten ,dairy garlic , Oats mushrooms and toms and they then to cause inflammation to the organs and the muscles and joints.

With me the gluten and dairy and oats causes severe diarrhoea, the mushrooms and garlic and tom caused inflammation to my joints and muscles and fever and night sweats.

So if you are still taking any of these food I suggest take a look at your diet and evaluate your diet . I know it is a big step to remove garlic and mushrooms and tom. Let alone gluten . It is not an easy step.

Hope all goes well with your Rheumatology appt.

[Karm]

Hi, I will definitely look at my diet. I eat all.freshly cooked foods not alot of sugars etc except in my tea but I will definitely have a look and do some trails and see what comes from that.

Thanks. I'm going back on some meds I was on before and she has adjusted sknes doses and tried a different vitamin D. So will see how it all goes.

Thanks

[KnitSewPurl]

Good to hear that consultant is listening to you and is able to adjust just make sure you listen to your body and make adjustments and rest when you can