Catch-22 with Chronic Fatigue

[Tansy]

Kind of just posting to vent a little, though any advice or insights would of course be welcome. Moving through the process of trying to get assessed for MC, I keep coming up against the requirement to have tried 'two conventional treatments.' Chronic Fatigue, the condition that I (and many others, for that matter) am dealing with, is widely recognised as having no conventional treatments known to work. While I've been referred for CBT and physio, my GP was clear that these are not so much treatments as long shots that can sometimes make the condition easier to live with. Experimenting with CBD oil has so far given great results, however, and I'm keen to experiment further, and with the benefit of a clinician, but without 'conventional treatments' being available, I'm struggling to get past step one with any clinics. Only Curaleaf have allowed me to even get to the triage stage, but I'm worried that here, too, the assessment will stumble at the 'two conventional treatements' step. How does one try treatments when there is no recognised treatment pathway?

Next steps, I think I'll go back to the GP and discuss it with them - they are generally sympathetic and may be able to help further.

Thanks for reading.

 

[node]

Kind of just posting to vent a little, though any advice or insights would of course be welcome. Moving through the process of trying to get assessed for MC, I keep coming up against the requirement to have tried 'two conventional treatments.' Chronic Fatigue, the condition that I (and many others, for that matter) am dealing with, is widely recognised as having no conventional treatments known to work. While I've been referred for CBT and physio, my GP was clear that these are not so much treatments as long shots that can sometimes make the condition easier to live with. Experimenting with CBD oil has so far given great results, however, and I'm keen to experiment further, and with the benefit of a clinician, but without 'conventional treatments' being available, I'm struggling to get past step one with any clinics. Only Curaleaf have allowed me to even get to the triage stage, but I'm worried that here, too, the assessment will stumble at the 'two conventional treatements' step. How does one try treatments when there is no recognised treatment pathway?

Next steps, I think I'll go back to the GP and discuss it with them - they are generally sympathetic and may be able to help further.

Thanks for reading.

Vent away here mate, no problem, with MC usually a lot to vent about... Have you had your appt at cureleaf with a specialist yet? If not I wouldn't worry - It sounds like you've passed triage already, and they are not putting any unsuitable patients forward to see the specialist - only peeps like yourself they will prescribe to

 

[GrownHealth]

I can see your reasoning about the catch 22 situation and understand your frustration but also explain this when Curaleaf ask you and we've had other members struggle to get accepted elsewhere then accepted at curaleaf so all hope is not lost there but have you tried CB1 Medical yet as we have had a new member who just applied and one week later they were accepted and they had many imponderables going into it.

 

[Tansy]

Hey thanks both, yeah I've had a bit of back and forth with Curaleaf and they're really good so far with personal responses and encouraging replies. I'm pushing ahead, have put in the order for the medical record (have to do it manually because am in Scotland) and like I say, curaleaf do seem pretty good.

I didn't do the form for CB1 Medical since I can't in good concience say that I have tried 'conventional treatements' as there are none, but I have emailed them direct to explain my situation - they've not come back to me yet but we'll see.

Thanks for the replies. Good to be here.

 

[GrownHealth]

Hey thanks both, yeah I've had a bit of back and forth with Curaleaf and they're really good so far with personal responses and encouraging replies. I'm pushing ahead, have put in the order for the medical record (have to do it manually because am in Scotland) and like I say, curaleaf do seem pretty good.

I didn't do the form for CB1 Medical since I can't in good concience say that I have tried 'conventional treatements' as there are none, but I have emailed them direct to explain my situation - they've not come back to me yet but we'll see.

Thanks for the replies. Good to be here.

Your more than welcome and there is hope on both counts then and I'd say your response so far to CBD has to count for something as well

 

[Tansy]

Your more than welcome and there is hope on both counts then and I'd say your response so far to CBD has to count for something as well

Yeah, I think so - I'll let you know what happens of course. It's amazing to have found something that does give me relief of symptoms, but it's early days and I'm stumbling my way through so far, it would be so much better with a clinician on side to advise.

Still, you're right, there's definitely hope yet! And thank goodness commercially available CBD does help a bit. It's a good stopgap until I can get something better.

 

[node]

Yeah, I think so - I'll let you know what happens of course. It's amazing to have found something that does give me relief of symptoms, but it's early days and I'm stumbling my way through so far, it would be so much better with a clinician on side to advise.

Still, you're right, there's definitely hope yet! And thank goodness commercially available CBD does help a bit. It's a good stopgap until I can get something better.

Your doing great - its the start of journey, lots to learn but promise it does get easier, a lot easier esp with our peeps/home here.

 

[R3d4]

Im pretty sure cbt and other talking therapies are counted as recognised treatments

 

[node]

Im pretty sure cbt and other talking therapies are counted as recognised treatments

Yes I think your right. @Tansy See how u get on - we can quickly get you in at CB1 Medical or anywhere else if you need/prefer.

 

[Tansy]

Heard back from CB1 Medical, they've helped me to realise that despite the fact there are no prescription medications available, that doesn't mean I've not tried anything. I've tried all kinds of things - exercise regimes, over the counter meds, diets, and of course commercial CBD oil itself. Other places made it sound as if 'trying things' didn't incluce the stuff I have tried, but only included prescription meds. That's not accurate - CB1 all the way! I've put in my form and am awaiting to hear back. They've been super encouraging. I'll need to get my med record from the GP, but I'm much more hopeful now than I was yesterday. Thanks everyone!

 

[GrownHealth]

Heard back from CB1 Medical, they've helped me to realise that despite the fact there are no prescription medications available, that doesn't mean I've not tried anything. I've tried all kinds of things - exercise regimes, over the counter meds, diets, and of course commercial CBD oil itself. Other places made it sound as if 'trying things' didn't incluce the stuff I have tried, but only included prescription meds. That's not accurate - CB1 all the way! I've put in my form and am awaiting to hear back. They've been super encouraging. I'll need to get my med record from the GP, but I'm much more hopeful now than I was yesterday. Thanks everyone!

Brilliant and it looks like your on course now to get the clinical guidance you wanted and it's amazing the amount of treatments that slip under the radar but actually help build a picture of things you've tried ..
Lets hope it's a formality from here on in .

 

[Tansy]

Brilliant and it looks like your on course now to get the clinical guidance you wanted and it's amazing the amount of treatments that slip under the radar but actually help build a picture of things you've tried ..
Lets hope it's a formality from here on in .

Thanks, I hope so too. It's hard to be certain, and it's hard not to feel like I might have the rug pulled from under me again - this conditionl has turned my life upside down and inside out, it's hard to feel confident in things. But I recognise that that's the effects of stress more than anything, and in reality, it's as you say - I'm on track to being able to get the guidance and oversight and help to use a medicine that will actually help me get my life back on track.

 

[R3d4]

I'm sure you will be fine , I was the same with initial worries but it's really not as complicated as our heads make it out to be

 

[Tansy]

I'm sure you will be fine , I was the same with initial worries but it's really not as complicated as our heads make it out to be

Thanks @R3d4 - you're right, it is easy to overthink it, isn't it? It's hard being on the cusp of accessing something that might actually help. Tense, you know? This has been really nice, though. Really supportive, and I'm particualrly grateful for the recommendation to CB1 Medical, as they are being really helpful. Now just need to wait for the GP surgery to find and supply a copy of my medical record (Scotland, so can't just do it online). I think I'll contact the GP tomorrow and see if they can expidite the process for me, because it's surprisingly hard toughing through these symptoms while knowing that real relief is potentially within reach.

 

[R3d4]

Your GP should be able to email you a copy of you summary care record

 

[R3d4]

How did you get on

 

[Tansy]

How did you get on

Thanks for checking in, friend. I have an appointment with CB1 Medical this week. Fingers crossed, but I think it will be okay. They've been really helpful and understanding.

 

[R3d4]

How did it go?

 

[Tansy]

Hey, just wanted to update here, thanks everyone for your support and kindness and for checking in with me. It means a lot. The appointment went well, I've recieved my prescription and have begun using my medication. CB1 Medical were welcoming, helpful, very understanding, and there was none of the fuss or stigma or suspicion that I was afraid there might be. It was one of the most pleasant and validating interactions I've ever had in the context of seeking treatment for any medical condition.

I'm experiencing dramatic relief from my symptoms, including increased appetite, better sleep, and relief from physical discomfort so I can take gentle exercise even when symptoms are bad. The psychological effects take a bit of getting used to, even on a small dose, but I'm finding my way through it. It's powerful stuff, but unlike other medication, there's apparantly no unpleasant side effect that can't be greatly addressed with a snack, a cup of tea, and a wee lie down!

This condition came on suddenly and turned my life on its head. I feel I've been given a new chance at life in a way that I didn't think was going to happen.

I've always been interested in politics and campaigning, and I'm becoming more and more amazed that it's not more freely available. I had no idea it had been legalised until a couple of weeks ago, and I've long believed that it should be. In due course, I think I'm going to try to learn more about it and try to campaign to raise awareness of it as a treatment. But in the meantime, I think I'm going to have a chocolate biscuit and another cup of tea.

 

[R3d4]

That's brilliant and you're going to find lots of like minded people with loads of good info for you