Many here suffer pain from heart pain (angina, MVA, etc.) through to musko-skeletal pain like sciatica and arthritis. Obviously there are many other sorts of pain.
My arthritic pain has been getting worse and had been affecting my Phase 4 rehab. I got to the point where I stopped attending a month ago. Currently I am awaiting my assessment for "gym by perscription".
Yesterday it was decided to refer me to a Pain Management Clinic. However, it may be a couple of months before a vacancy occurs such is the need. I will report back once it gets going. Crossing my fingers that it helps.
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MichaelJH
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Unfortunately those of us living with Refractory angina confound Cardiologists and Pain Specialists alike.
All pain whatever the cause is a burden many of us live with on the forum. It can be the ultimate uninvited guest who refuses to leave our life's party!
I went to a very good Pain Management programme. I still have my pain but I have learned to emotionally respond differently to my pain.
Trying to describe a pain is very difficult, it is a very personal thing. This is why a condition can go undiagnosed or misdiagnosed. Those we rely on to help us are very often to busy to listen properly. Very best wishes for the future.
I had osteoarthritis before my HA, that has improved due to weight loss (unintentional) I now walk about 2-4km a day, some walks okay, others with a little knee pain. If it gets too much I cut short the walk.
Exercsie for the sake of it doesn't come easy for me, I like competative sport, but not sure who is left alive for me to compete with..ha ha!
I am having a go at gardening, have an acre of vines, olive trees and other fruit trees here in Portugal, but don't have green fingers at all. So it's digging and a bit of pruning,.
I've had chronic pain and spinal problems for over 40 years and use a wheelchair and scooter. . We moved to this house 6 years ago mainly to get a smaller garden. I wasn't a gardener, knew nothing. It was winter. Spring showed just what we'd taken on. A completely untouched garden smothered in raspberry canes and crocosmia and rose bushes that you couldn't even tell what they were. It was horrific. I had no choice but to learn what the plants were and start trying to clear it. There was more couch grass than soil. I had to sieve every inch. The result was amazing bothy to the garden and to me. I couldn't believe what I'd managed to do and the effect it had on my pain. Little an often of course but it gave me a goal which we all need , took my mind off the pain when I was working ( OH I suffered afterwards) and I found I could do more than I ever thought. What I'm saying is not necessarily to take up gardening but to find "something" you can immerse yourself in to take your mind off the pain and a goal to aim for whether it's writing, art, knitting, woodwork or mending a chair. I didn't want to do that garden but I had to. It was a jungle. The gain was immense.
Also have osteoarthritis. Hands, knees and (not boompsadaisy) elbow. Starting phase 4 at the end of the month, I can skip sessions if I’m in any pain (ha, if I followed that I wouldn’t ever go!)
Weight loss does help as the arthritis loves the inflammatory process. Mine has never got too bad that I can’t do stuff.
I hope they can suggest something but pain clinics vary enormously. I went to 4 plus two private consultants before I found a really good one who actually gave me a diagnosis after 10 years struggling. The standard offering to everyone, even at pain clinics tends to be gabapentin and amitryptilene or anti inflammatories. If you feel this one doesn't help, ask to go elsewhere. I can recommend a superb one in Lancashire.
For me it is either Paracetamol or Tramadol. Paracetamol doesn't touch it and Tramadol potentially causes addiction depending on dose and timeframe of use.
I went through everything on the market from paracetamol through codeine to tramadol. They either didn't work or made me violently sick. Gabapentin made me seriously suicidal and amitryptilene like a zombie even on half dose. Can't take anti inflammatories because of stomach ulcers. In hospital I was put on morphine but after developing a rash and difficulty breathing, they decided I was allergic to that version and put me on oxynorm 19 years ago at 5ml every 3 hours. (The liquid, short acting version of oxycodone). That's now all I have but the dose has had to be increased, very gradually, now to 15ml. I suppose that's not bad for all those years but they now won't increase it any more because of the scares about opiate addiction. Honestly who cares if it relieves the pain but I don't know what I will do when this dose stops working. Because I take the short acting type it gets out of my system pretty quick and I can miss several doses on a rare good day. I'd happily stop tomorrow if anything else worked so I don't think I'm addicted to it; certainly not mentally addicted and it certainly doesn't give me a high. I wish they would do more research into chronic pain. I've tried every alternative therapy going; Bowen was the best, acupuncture, Reiki, CBT, psychologists, you name it I tried it. I ended up teaching the last young therapist about chronic pain and have been asked to talk to groups of patients about how I cope. Often I don't. Right now, today I can't stand up more than 30 seconds because of unbearable pain; a massive flare. Aside of medical appointments where I am forced to go out , I haven't left the house all year. Friends drop you because you can't reciprocate visits and often have to cancel. I've even had pain consultants call me a liar and say it's all in my head. I've had this really severe pain for 20 years now but have had fibromyalgia for 40 years. How I wish it was JUST Fibro. I could live with that. NO medication takes away all the pain. Some numbs it a bit. You really do have to learn how to live with it and find alternative ways of doing things and things that totally take over your brain so you can push pain into the background for a while. I paint and do complicated knitting that I need to think hard about. After my heart attack I stopped smoking but that nagging voice in the back of my head keeps saying "If you carry on, it will finish you off and at least you wouldn't have to live with all this pain". What wouldn't I give for just ONE day pain free? Oh I did- when they sedated me for the stents. Wonderful. Sorry to ramble but the lack of research and understanding really gets to me and the lack of understanding by those trying to get rid of opiates makes me furious and terrified.
Keep saying what you are saying. I am absolutely with you.
The despair of those of us with chronic and acute pain is not really understood by anybody else but those who have lived through the dark night of the soul of pain.
My acute pain from a my vasospasms feels like being in labour except they last for much much longer. At first you feel you are going to die closely followed by wanting to die!
I am only truly pain free once a year when I go into hospital for my annual fix of very high IV GTN and IV morphine via a patient controlled analgesia.
I have had Cardiologists and nurses saying surly your pain can't be that bad! I was told once to stop making such a fuss when I was crying in pain....I am not joking.
I told the last on call Cardiologist who said he wanted to stop my IV GTN despite my written protocol saying otherwise that the only person who could quantify my pain was me and it wasn't appropriate for him to make such a judgement.
Sent him off to speak to my Prof.
Because we experience chronic pain it changes the way we perceive pain. We feel our pain more keenly, the neural pathways in our brains are well trod.
The emotionally pain that accompanies our physical pain is just as painful.
I was inspired by your post about your art. I am clearing my desk at the moment so I can start doing some watercolour painting.
We are indeed a silent army because no one is listening.
My heart goes out to you too.
Sending my best wishes from a fellow human being living with pain in their life.
OMG I had that horrific attitude from a nurse about not making a fuss. I was taken into hospital last year with suspected cauda equina but was dumped on a medical ward (Only bed available). Firstly they couldn't cope with giving my painkiller every 3 hours which is absolutely essential but they claimed not to have the staff to take two nurses to check it off. First night, the bed I was in had a very old mattress and I was in agony. It was actually decommissioned the next day and replaced with a new one. But that night the pain was so bad I was crying and moved out to sit on the corridor floor to try not to wake people. Two nurses came along screaming at me to get back into bed and to shut up as I would wake everyone up. One even raised a fist to me. I was absolutely furious and discharged myself next day. I put in a complaint but all I got was the ward sister accompanied by the threatening nurse which made me feel very vulnerable. The staff on a medical ward had absolutely no idea how bad chronic pain can be and didn't even seem to understand the danger of missing doses of opiates. Strangely on the cardiac ward after my heart attack, I was allowed to keep my medication in my drawer and self medicate. On previous stays I was allowed to sig a form allowing me to self medicate as long as I kept the medicine in a locked bag. I know they are short of staff but refusing medicine is disgusting and I suspect, illegal.
The consequence is Post traumatic stress disorder for many...
There is hope though and I try very hard to dilute the negative experiences in my positive ones.
I was so well looked after last time I went into hospital in April.
I went straight into resus and had my ECG done, bloods taken, IV GTN started and morphine given all with in the hour.
Up to CCU 5 hours later to be greeted by the ward sister who had closed the blinds because of my neurological symptoms she had waited to see me before going off duty late.
The nurses were compassionate and kind through out.
I am allowed to keep my medication too as I need to take them on time.
OH wow that was good treatment. When I had the HA I was dumped on a corridor behind locked swing doors for 5 hours before anyone came near. Couldn't even get to the loo because they refused to take my scooter and I can't wheel a wheelchair. Trolleys were 3 deep on the corridors. You see I was female, wasn't grey, clammy and sweating or clutching my chest. Once they finally got me into the cardiac urgent care ward it was fantastic; like a holiday ; well almost LOL The ward they moved me to next morning wasn't as good. It does all come down to the nurses. Medical nurses obviously don't understand pain. IF I'm in again I will move heaven and earth to control my own pain relief and just tell them when I've taken it. Timing is important and I just can't wait half an hour for nurses to be free. The stuff lasts 3 hours and that's it. They can have my heart meds that aren't critical on timing but nothing else. oddly the one thing I couldn't get at all which upset me most was denture fixative. My false teeth are so loose I can't even speak without half swallowing them and the hospital is 40 minutes away without traffic so I couldn't even get someone to bring some. You'd think a hospital shop would stock it. Do you have to sign a form to keep your medicine? They insisted I couldn't do that for a controlled drug. I'm sure they were wrong. I had done it before.
I have been in hospital 13 times in the last 7 years between 5 and 16 days and they made some mistakes in my care and I just kept complaining. I was left for hours in pain in A&E. 11 hours is the longest wait in A&E for me.
This was the first time I was looked after so well .
I won over the Head of Cardiology , I think he got fed up of my emails and the Trust acknowledged they could have done better and that I had been traumatised by my experiences.
The Director of Medicine apologised to me in person.
I have the PCA of morphine so there is no need for me to ask for my morphine. I am the only Cardiac patient who has one the Cardiology Matron agreed to it being used and the Pain team come to the ward to see me. I just wish I hadn't had to go through hell and back to get this care
I have never had to sign anything about my medication they just ask me whether I have brought it in with me. Then check I've taken it and sign the prescription chart.
Hm, that obviously works better than me taking my bottles of oxynorm. My prescription specifies the brand name yet that time on the medical ward,they gave me the generic when mine ran out which makes me ill. That was my longest time hanging around. That time was 4 hours actually in A&E then from 12 noon to 12 midnight in aside room while they tried to find a bed. All they needed to do was an MRI scan then the consultant was supposed to come and tell me the result the same day. He never turned up and no one could find him. I wasn't hanging around being screamed at with no painkilller until he turned up next day.
I totally get where you are coming from. I seem to be in the same situation as you. I have been through many pain meds with degrees of success and failure, tramadol worked well for me though doc stopped it because of the addiction scare. Though I have never taken more than prescribed, and we went through rigmarol of other alternatives, none of which worked. Until I started anti inflammatory with other meds. Now because of the apixaban I have to stop the antis, so I'm back at square 1 again. I just don't know where this is going to end. Am fed up with it all. I think the doctors sometimes need to listen to patients more. I want my tramadol back!
This panic about addiction is ridiculous. If you are in constant pain, you need pain relief. I accept that chronic pain changed the pain pathways but until there's a way to reverse that, what alternative is there? I watched my dad die of prostate cancer that had spread to his bones in the worst pain I have ever seen yet he only got proper pain relief in his final week. One GP even told him to "Get in touch with your inner self". Dad threw a slipper at him and told him to get out. I guess now they wouldn't treat him for fear he'd become addicted before he died. There's a HUGE difference between mental addiction and physical addiction. I don't crave my painkiller unless the pain gets really bad. I can forget to take a dose when it's good but if I do miss a few doses, yes I will get withdrawal symptoms just as I would with many other medications. Cure the cause of my pain and I'll stop taking them today. If inflammation causes heart disease and cancer,then treat the cause of the inflammation.
I totally agree. I need the pain meds I don't want them, but I'm certainly not addicted. I wish they would listen. People who don't live with pain constantly really don't understand. And because of my heart probs now it's just making things more complicated. I just feel at the moment I'm fighting a loosing battle, I don't want to spend my days resting because I haven't got the right meds now. I've been there. Anyhow onward and upwards hopefully when I see the doc next. When I see the cardiologist I'll ask him/her if there are other alternatives. Thanks for your reply. X
Morphine is claimed not to work for nerve pain but for me it's the only thing (oxycodone) that does work. After 20 years I honestly don't care if it's addictive. For long term, other things are better if you can find something. I defy anyone to find something that works on phantom limb pain or CRPS.
As well as being diagnosed with ischaemic heart disease, and stable angina, I'm also a long term diabetic - type 1.5, having been unable to produce my own insulin for over 25 years and I have chronic peripheral neuropathy. Throw in some osteoarthritis (mainly in my hands) for good measure along with years under the care of the hospital pain clinic and still I remain in acute pain.
I think over the years, I've been on the non-stop pain-relief roundabout with very little success.
I've graduated to being on the max dose of
Gaberpentin, with both Tramadol and Amitryptline, yes at the same time!! for the nerve pain - it doesn't even touch the sides.
I'm pleased to say I have no addiction issues to the Tramadol, I can take it or leave it. TBH I don't bother with it for the nerve pain anymore, since it doesn't work for me. I just use it as below -
For the osteoarthritis, Tramadol with Naproxen provide some limited pain-relief.
For the angina, I'm just starting with the slow release of daily Monomil, so the jury's still out . . .
The GNT Spray is as yet, untried.
If anyone has been able to achieve significant pain relief for nerve damage, which I know is very difficult to treat, I'd love to know.
I was offered Gabapentin , also stellar ganglion block and spinal cord stimulator the latter a highly invasive technique.
None have been researched for the use in patients with vasospastic angina so I declined the offer of such treatments.
This was interpreted by some doctors that my pain can't be that bad then!
I also heard this from a Cardiologist 'well your ECG's and Troponin levels aren't that bad why do you have so much pain? '
Another idea on the the horizon is a coronary sinus reducer again no research base with no evidence that it works for those with microvascular dysfunction or vasospastic angina it may make things worse.
What we are all saying is that there is a BIG problem with pain because at present pain is being poorly treated and the underlying causes not understood.
I’m currently enrolled on a free 6 week course “Cognitive Behavioural Skills to Treat Back Pain: The Back Skills Training (BeST) Programme” designed for proffesionals but open to anyone. I find it relevant to my low back pain but think the info will cross over to other forms of chronic pain. HTH.
Hi Michael. Just a thought and you may well have already been down this route, but have you tried any supplements to help? I had back pain and knee pain for many years. I take a glucosamine & chrondroitin supplement for my knees. I notice the difference if I stop taking it for any length of time. Other people swear by Rosehip or Green Lipped Mussel. I should say here it’s important to check with your GP/Cardiologist/pharmacist to ensure there aren’t any interactions with your meds. It’s not an overnight solution but I remember reading of studies that showed it is as effective an anti-inflammatories but without the side effects. It’s available on the NHS too (or was).
Good luck in finding something that works for you.
There's also Imove for arthritic pain. It was developed as Yumove for dogs but there was such a response from owners saying how their dogs had improved and how they wished it was available for them, the company Lintbells developed a human version. I've been advised not to use my TENS machine anywhere above waist level since my HA.
It's such a shame you can't use a TENS if you have an ICD.
I use a TENS for my vasospastic angina pain. If I couldn't use a TENS I would have to go into hospital far more often. I put the pads on my back above and below my bra line.
They prescribe TENS machines at Bradford and Liverpool Refractory Angina services.
I had a simple mild Heart attack, that's all but have been told a TENS in the chest area could affect my heart adversely and I shouldn't use it in that area. Oh I also have simple ventricular tachycardia.
I don't have a "team". Haven't see a cardiologist since I had the stents. NO follow up at all; only GP. I don't have angina at all, just my chronic spinal pain one of which is at T12/ L 1 and the other slap bang under bra strap which makes it awfully difficult to know if I@m getting heart or spinal pain or top of stomach. I could really do with my TENS for the vertebra at bra level but it's also at heart level and GP Just said no. There's also a warning in the instruction booklet.
I find the pain from arthritis like having toothache in a different place every day. Some days I cope some days I don’t. Funnily enough I had less muscular pain on the statins but more bone pain. Apparently changing my statins and ‘whipping out’ the parathyroids will make me feel much better. I don’t have that confidence. I found that HIIT exercise helped enormously but haven’t been able to do any since the heart attack so just sticking to the swimming for now.
Hi Michael, have you thought about physio for your osteoarthritis? My left hip was pretty bad and my local NHS hospital do a series of hip classes for both pre and post op. I found it definitely staved off needing surgery for quite a while. Eventually I did get a nice shiny titanium ceramic replacement. Pain was minimal, just stiffness and aching. Learning to walk again properly does take time and hard work, but exactly the same (lots of walking) as recovery from a bypass!
It is over a decade since I broke my femur. PAD became an issue in 2010 and arthritis in the hip above 4 - 5 years ago. I asked about physio but was refused!
Now with "gym by perscription" and the Pain Management Clinic on the horizon I will see where they take me...
It must be so debilitating to have constant pain and I agree that it's only the individual who can truly describe their own experience. Does anyone recall seeing a TV series in the last couple of years called 'Doctor in the house'? The presenter was Dr Rangan Chatterjee, a very engaging personality. One programme I watched showed how he weaned someone off an enormous number of pain pills that she had been taking for years to deal with chronic pain. Over a period of time (I don't remember how long it took) she was able to stop all the pills and the programme concluded with her attending exercise classes and feeling no pain at all.
I watched that and was disgusted that they made out that that would work for anyone in chronic pain. It doesn't. If someone has a physical problem causing severe pain like adhesions or bone on bone arthritis or spinal damage, only fixing the physical problem can help. Believe me after 40 years I had tried all his ideas .
I have osteo and inflammatory arthritis as well as my unstable angina. Go to phase 4 rehab 3 times a week most weeks and find taking my co-dydramol an hour before class helps. Sometimes more than others!!
Michael, does your heart condition preclude you from joint replacements? With osteoarthritis, sometimes little else helps. I’ve had 2 knee replacements & I’m totally pain free.
I’m on the south coast, I found, with my 2nd knee replacement last year, that they had introduced a ‘garden path’ referral system, designed to prevent GP’s making direct referrals to surgeons & sending patients off to see a physio for assessment, tests, joint injections etc, even in clear cut cases such as mine.
I was fortunate in that I had been to a local physio running rehab sessions for orthopaedic patients at my local pool, after my first op. I returned to her when the other knee suddenly deteriorated after a fall, and she warned me of the new system & advised me to request a private referral to my surgeon & then ask to be put on the NHS waiting list. I saw him privately within 2 weeks (about £300 including X-rays) and had my surgery on the NHS about 12 weeks later. My surgeon works at a private clinic where NHS funds operations, so I knew it would be him doing the surgery.
My mother had heart failure and was refused any anaesthetic but needed a hip replacement. They did it by epidural, no problems at all and totally pain free afterwards.
I’d be very interested in your progress. My muscle & nerve pain has got to a almost unbearably stage, mostly my back & shoulder pains & sciatica. I had slight issues in shoulders prior to HA last year, but it is now a whole new level.
When I bring it up with my GP he likes to skip over it, so I’ll have to book a appointment specifically for ‘pain’.
I would like it diagnosed first, but my GP is not currently engaged when talking pain. So he has been great with blood tests & resulting anaemia & Vit D issues, but as soon as I mention pain, he moves it to other issues.
I can only guess that he is trying to avoid a Statin or Fibromyalgia type discussion. So moves on to thing he can ‘fix’. So that’s why I say, I may have to book a ‘pain’ appointment & not allow mention of my heart 😂.
But if that doesn’t work, thank you I’ll invest in a osteopaths assessment. 👍
Afraid that often happens with GPs. They have very little knowledge of how to treat pain and very few possible treatments. Funny, I had the stating/Fibro conversation with mine just 2 days ago as I've had much more widespread pain. He was quite happy for me to come off statins to see if there was any improvement but it would have to be for 3 months and woudl still be difficult toknow given the variability of my pain ie is it a flare up or tablet related?
I think mine is afraid of me asking to come off mine, which I won’t. My HA was put firmly down to smoking by my cardiologist ( nurse even shoved the clot under my nose during the Angio 🤢). But my cholesterol is down to 1.7 from 5.7, I’ll take that & it’s all statins as I’m not good sticking to diets.
My pains has a bit to do with anxiety & depression, so I don’t think he wants to discuss that, as there isn’t much support up here. But like all GPs, sometimes need to put in the hard work 🤣
Good luck with yours, I hope they find you some relief, as the waking up with pains & going to bed in pains is just so difficult. 👍
Hi Michael, Sorry to hear of the pain. I’m curious about the ‘phase 4’ rehab that you mentioned. After my aortic valve replacement and double bypass I had six weeks of rehab exercise but nothing else.
The rehab after surgery is the one that follows some weeks afterwards. This typically lasts 6 - 8 weeks. Phase 4 is continuing rehab in the community and the people running your Phase 3 should have given you details of availability of Phase 4. You could either ring them or see your GP.
Rehab isn’t offered to AVR patients in our area unless you have a bypass as well, even if you have an underlying condition like Dilated Cardiomyopathy so not everyone has rehab. 😕
I remember talking to my last GP about the worries of tramadol addiction and she very wisely said to me “ you have chronic in treatable pain the likely good is that you will become addicted to painkillers but surely that’s better than being in constent pain”
Supplements I take for pain,B12,life extension, Mega Benfotiamine and Alpha Lipoic Acid.B12 one a day' Benfotiamine and Lipoic Acid one each twice a day taken together,morning and evening, buy from Amazon and read the reviews.I have had four HTs and 6 stents aged 74 and still here.
I wrote you a lovely reply to you earlier. No idea where it is? Could be that I'm just not seeing it? And who said microvascular disease only affects your heart...those persons should tell my eyes!!
Any ways, long and short of my reply:
Sort your pain- self refer to NHS physio, go to private physio, check out Actipatch (anti-inflammatory battery operated pain relief). .This is my relief system as can't use medication.
Could you continue Phase 4 using an adapted programme, and using brace/ orthotics? I say this as my local gym referral system would send you to the cardiac rehabilitation phase 4 exercise physiologist if you also have a cardiac diagnosis.
Like you I attended phase 4 with my crumbling body supported by knee brace for my painfull /unstable knee and orthotics until my knee replacement.
I hope you can get your treatment soon Michael, as always thanks for your support and answers on here. Hope you can have one less thing to worry about x
I shall be following your progress closely Michael. I’m in exactly the same situation. Since my HA in 2016 my osteoarthritis has got much worse. It affects daily life and exercise so much that I’m finding almost any weight bearing exercise really difficult. I’m fine sitting, driving and generally completing small tasks but walking even short distance is a problem. Most affected: feet, knees, hips. Worse even when lying down. I’m waiting for a referral to neurology now as doc has suggested that it’s linked to nerve pains. Hey ho.
I was always taught that addiction is not an issue if the patient is in pain. The most common reason for dose increases is that the pain is worse not habituation. I am willing to be shot down in flames as I do not have the burden of chronic pain but can I offer the following reasons why pain control in hospital can be worse than at home in spite of the need for people to be there.
1 You as a patient do not feel in control!
2 Staff truly do not understand
3 Schedules of medicine giving are inflexible
4 Staff unavailibility to check controlled drugs
5 The need to be honest at the outset is missing i.e
" We'll be back in a minute" not "it will be 20 mins before someone is available to check your meds"
" This will help" v. " we want this to help"
" I can't imagine how you must be feeling right now"
6 So many tasks are time limited on a ward. Examples - prep for theatre patients, doctors rounds, acute admissions, medical/ surgical emergencies, IV antibiotics etc etc so pain control slips down the list
These are not excuses and should not affect tbe care and support of people with chronic pain.
Finally not to be forgotten that nurses and doctors like to feel they are helping/ curing and dealing with the patient with intractable pain is upsetting and some professionals cope by avoidance.
Now retired 15 years I would like to apologise that all the above still happen and hope more understanding of how to reverse these anomalies of pain pathways can be found.
Milkfairy I believe tolerance does occur. There were some old studies suggesting morphine can rarely cause hypersensitivoty to pain but cant find recent ones. I suspect that is very rare.
Did find this however which has some bearing on the issue but somewhat alarmist for younger people with pain issues on morphine. My feeling is that advances in research on the subject may well arrive in time to help the youngsters however.
Best wishes Michael. I hope you get it sorted quickly so you can resume life pain free (well apart from the usual creaks and stuff that come with age and experience!).
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