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Heart vs pain

Qualipop profile image
28 Replies

I have lived with chronic spinal pain for well over 20 years and have now run out of options for keeping it under control. I recently saw a new, lovely pain consultant who said there were no more standard options but he would like to suggest I try CBD. However my heart is a problem. There hasn't been enough research done yet on its affect on the heart so before prescribing it he needs to know if my heart is stable.

I had a heart attack and 2 stents 5 years ago; get no pain but I have been getting breathless for over 6 months. A second angiogram 5 years ago showed two blockages in the LAD which were around 6 4%. Blood was flowing freely so they were not stented. The pain consultant obviously wants to know the condition of those blockages and whether they have got worse or not changed.

I discussed this with a GP on Monday who said she wouldn't recommend another angiogram which in any case would take over a year to arrange here but she would send ALL my test results to the pain consultant from my original discharge letter to recent holter monitor, echo scan,cholesterol, blood tests etc. She's just waiting for the results of a chest x ray and blood test I had yesterday.

I'm not thrilled about expecting a pain consultant to make decisions on the condition of my heart based on that information but can't see any other way of ascertaining whether the two blockages are stable without having an angiogram but in the meantime my painkiller has pretty much stopped working and the more pain I have the less exercise I can take. I can now barely even walk into the kitchen or stand up for more than around 3 minutes. Besides the fact that an angiogram is invasive and carries risks, I can't afford to go privately and can't think of any other way to find out the state of those blockages.

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Qualipop profile image
Qualipop
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28 Replies
MichaelJH profile image
MichaelJHHeart Star

I think you should ask for a CT Angiogram. They are not quite as good as an angiogram through the groin or wrist but are non-invasive. For best results they use a contrast dye unless there is a query about kidney function or allergy to iodine?!

Qualipop profile image
Qualipop in reply to MichaelJH

a Thanks, I didn't know there was such a thing. No problem with allergy to iodine; had that for kidney x rays. However there's still the problem of how long I'd have to wait. GP says anything to do with cardio that isn't an emergency is taking over a year. I'm not under a cardiologist so there's noway to ask direct.

Milkfairy profile image
MilkfairyHeart Star in reply to Qualipop

I agree with Michael a CT angiogram is an option.A Cardiologist is probably in the best position to recommend your ongoing management, including which tests are appropriate for you rather than your GP.

I would remind your GP about your quality of life and keep pressing for a Cardiology review.

Good luck, you sound as though you are between a rock and a hard place.

Qualipop profile image
Qualipop in reply to Milkfairy

I've been asking for a review for a long time. Her concern wasn't so much about the angiogram but for how long it will take to get one. Once the two latest tests come back I'lll try again but it's really hard to get to speak to the same GP. YOu get someone new and you're back to square 1 explaining it all from the start and the just want to redo tests they've already done and consistently blame breathlessness on my spinal muscles or having smoked. Quality of life never comes into it.

Milkfairy profile image
MilkfairyHeart Star in reply to Qualipop

It does seem that quality of life just doesn't get the acknowledgement it deserves.

Qualipop profile image
Qualipop in reply to Milkfairy

I agree. Some treatments may shorten your life slightly but in the scheme of things I'd rather have a good 5 years than 4 years of hell

Ramilia profile image
Ramilia

Qualipop,

Just on the subject of spinal pain - and I expect you've already tried this, but just in case you haven't - lidocaine patches have helped my husband who has osteoporosis, diverticular disease, COPD, and heart disease. Two HAs and aortic valve stenosis.

Your comment here is also his experience: '...but in the meantime my painkiller has pretty much stopped working and the more pain I have the less exercise I can take. I can now barely even walk into the kitchen or stand up for more than around 3 minutes.'

Just a thought.

Qualipop profile image
Qualipop in reply to Ramilia

Thanks but it's been over 20 years now and I've gone through every single thing on the market including alternative therapies. Lignocaine badly affects my heart rate; I'm allergic to some; some made me violently ill;the usual for nerve poain, gabapentin made me dangerously suicidal and didn't touch the pain; allergic to oramorph. The only thing I have now is oxycodone which after so many years has ceased working and the dose can't be increased any more. It did work; the short acting should last 3 hours. It now lasts around 90 minutes and is now affecting food transit- a common problem with opiates. CBD is the only option left IF it's safe for my heart. Knowing me I'll probably go through all the hassle then find I react badly to it LOL. The only treatment in all those years that has actually really helped was Bowen therapy which got me from bedridden to active and able to function almost normally. My therapist has moved abroad.

Slip-Digby profile image
Slip-Digby in reply to Qualipop

Have you tried Fentanyl?

Qualipop profile image
Qualipop in reply to Slip-Digby

Years ag o

Ramilia profile image
Ramilia

I'm sorry. I hope you can find something positive and helpful from your recent referral to the pain consultant.

Do you know that if your GP says they will refer you but there's going to be an unacceptable wait you can be referred to a private consultant and the NHS will pay? Look on the NHS website. Under "Your choices in the NHS,". I was waiting for an EKG for months and and the has consultant was happy to refer me. It actually helps them to bring their waiting list down.

Qualipop profile image
Qualipop in reply to chickeninthewood

NO I didn't. Thank you.

Purpled profile image
Purpled

Hi

I have exactly the same problem with blockages in the LAD, was going to be stented but a mass was found and that was dealt with and was referred for stress test which showed that blood was flowing freely. Sorry gone a little off track but my blockages and mass were both found by having a CT Angiogram done by an interventional cardiologist who will only do invasive angiograms now for fitting stents etc.

Qualipop profile image
Qualipop in reply to Purpled

I hadn't heard of a CTY angiogram; makes a lot more sense when you just need something checking.

MountainGoat52 profile image
MountainGoat52

Hi Qualipop,

I'm really sorry to hear you are having increasing problems with your back pain. From experience I know it can be very debilitating. In my case it was temporary, not a long term issue which must be extremely wearing. I really hope this issue can be resolved soon so that there is an improvement in your quality of life.

I would have thought that the Pain Consultant would have been the one to call the shots in this case and not your GP. As has been mentioned, a CT angiogram would be a good way forward so the Consultant can deal with your situation in the most appropriate manner without causing issues with your arteries. Whether the Consultant can arrange for one is, however, another matter.

Hoping the appropriate action can be found to improve your situation as soon as possible.

Gerald

Qualipop profile image
Qualipop in reply to MountainGoat52

I don't thinkthe pain consultant can refer to cardio and he expected me to still be on someone's list which I am not.

MountainGoat52 profile image
MountainGoat52 in reply to Qualipop

Sorry to hear that. Your GP really ought to get a grip of the situation. It is not right that you are living with this pain. There must be a solution.

Qualipop profile image
Qualipop in reply to MountainGoat52

GPs can only give simple painkillers; everything else is down to pain consultants. Overt he years I've tried at least 7. Only two were any help but there really is little that can be done for chronic pain once you've gone through all the meds , patches and injections. If my original problem had been diagnosed at the s tart and hadn't taken 10 years to get a diagnosis, I could have had a fairly simple surgery. But by the time I got a diagnosis things were too badly damaged for surgery to help. My spine is still not quite bad enough to risk surgery because of the risk of paralysis. Believe me my GP has tried everything and everyone he can think of from physio to neurosurgeons and pain consultants. Not all pain consultants are good and tend to just give gabapentin, lyrica and amitriptylene and if they don't work, they tell you to try gardening.

junik53 profile image
junik53

What actually is the Bowen therapy you had and as it worked well for you could you find another therapist or the one that moved abroad ,could it be done remotely ie Zoom or is it a hands on therapy?

Qualipop profile image
Qualipop in reply to junik53

Bowen is a very gentle hands on rolling, stroking movement. It's not manipulation but is very powerful. Unfortunately people can set up as a Bowen therapist after doing a short course. I tried two local ones with bad results. My original therapist was a very well known teacher with years of in depth experience in physio and anatomy. It sounds and seems very strange because the movements are very small but if it's overdone it can make a condition worse. Google Bowen therapy for a description. A good therapist will do no more than 3 treatments if it doesn't seem to be working. It can work on anything from a frozen shoulder to jaundice by gently clearing the liver but you really do need a well qualified therapist

junik53 profile image
junik53

Thankyou so much for the information,very sad that you can’t find a good one, don’t give up the search as a new one may come good for you, good luck ,and I hope that your pain lessens in your back so that you can find some peace x

Qualipop profile image
Qualipop in reply to junik53

After 20 yrs that would be a miracle LOL. We can but hope.

Ethel14 profile image
Ethel14

I had musculoskeletal problems with my shoulder attended pain management the consultant recommended trying an anti depressant but I can’t remember the name of it, eventually after a year the shoulder pain subsided with physio, they said it could have been caused by my diabetes.

Hope things turn out well for you.

Qualipop profile image
Qualipop in reply to Ethel14

That would be amitriptylene; the standard anti depressant given in low dose for pain. Tried at least 10 times over the years. Can't take it; leaves me like a zombie.

Ethel14 profile image
Ethel14 in reply to Qualipop

It was duloxetine that the consultant stated

Qualipop profile image
Qualipop in reply to Ethel14

OK it works the same way. I had it prescribed but never took it.

Ethel14 profile image
Ethel14

It wasn’t that I will try to find my paperwork.

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