Well today I have decided that pain has won the battle I will have to go to the doctors. I have had this for so long and the muscles are now coming out in a tight and knotted sympathy. My lower back around the kidneys has two very pronounced muscle spasms that hurt so much when I try to massage them out. The straw that broke the camels back was the gritty neck, spine and shoulders that locked in bed and left me stuck and unable to move with out excruciating pain a number of times.
I know a lot will be thinking why not go earlier? Well I have had such a problem to get them to do anything I feel it will be another waste of time. My old GP surgery treated both my lung and heart conditions without any problems or disputes on what was causing what. My new GP surgery when we moved meant I was having a number of Heart procedures and tests. So all they concentrated on was the heart to such a level that my breathing problems were diagnosed because of my heart conditions but did not once do any test on my breathing. My Heart consultant sent a letter to my GP's stating his concerns on my poor breathing, but still nothing was done! It was not until about 3 years ago I found I had worked with asbestos for over 10 years that I had a Spiro at the GP surgery to show I had RLD. After been given water tablets that hurt my kidneys and told to take for the month that they took me off them, then put me in touch with a consultant more tests and confirmed the RLD, Fibrosis, Paralysed Diaphragm and PH. Even after that the GP would look at my peak flow as a benchmark to my health? I have dropped 300 from my ICU stay in 2008 and peak flow is not a good benchmark for RLD?
I have had my pace and ablate cancelled because of the lung test results! They openly told me that they did not want to do any other operation to my heart as they do not think I would survive them. The Pace and Ablate was a back up plan and as risk free as it could be.
If I go and hear the mantra of "Sorry you will have to live with it" once more, I am going to go ballistic! Even I do not like me when I get to that level of anger. Maybe a couple of cups of camomile tea before?
Fed up!
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Offcut
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Hi Offcut nothing wrong in going ballistic with good cause! Maybe if you had a go at them they might do something. How about a referral to a pain clinic? Would that be helpful? I wish you luck anyway and hope you are feeling better soon. Hugs xx
Sometimes it seems that they are bit put out that I have taken time to look at my conditions in more depth. One got quite rude that I had done a beginners course on the heart and heart conditions with Reading University Institute for Cardiovascular and Metabolic Research. It even showed how to do a dissection of a lambs heart!
The way I Look at it I know what I can do and cannot, so when I cannot do what I could I have a problem or it is just getting worse?
Well all i can say is kudos to you Offcut for educating yourself in the midst of this awful situation.
I used to be an Expert Patients Programme tutor which is about self-management of long term conditions. You would be a role model there.
Is it right that there seems to be insufficient communication between your heart specialist and the lung one where you had the spirometry?
Various possibilities in no particular order:
You are entitled to a second opinion.
You could remind your GP that since he is the gateway between all the healthcare people you see, he should do more to find out whether you are really disqualified from the treatment for clinical reasons, NOT financial - sometimes older people are denied treatment to save money. Not saying this is happening of course, i have no idea, but worth checking.
GP must also sort out pain clinic/specialist referral if you want this.
NHS sometimes have acupuncture, also cranial sacral therapy works well for my partner and for me, but probably isn't available on the NHS.
You could ask to change your GP.
You could talk to PALS about your concerns.
You could telephone your lung consultant's secretary and tell her your concerns and ask if she could ask your consultant whether h/she could give you more information about whether this operation would be clinically possible for you from the breathing point of view. Secretaries are worth their weight in gold and worth keeping in with.
Call the BLF helpline for help with dealing with this. You know the contact details
Finally while my gut instinct would be to be furious, you may get
better results by being firm, clear and very assertive (as opposed to aggressive) and standing your ground. You'd help keep your blood pressure down and feel a bit more in control. If there's someone you could take with you to appointments, that would help. Always useful to have a witness
I hope you can find a way out of this hole, Offcut.
My heart consultant has been a real asset and he even got me to have a test for Anderson Farby which turned out I was ok and did not have it. One of the reasons it seems for the Pace and Ablate cancellation is I suffer Tachycardia and AF the pacemaker would cure the Tachycardia but I may need that when the pressure increases in the PH which would need more beats to get O2 to my heart and lungs? So as a result I would be more SOB or collapse? Or have a speed control knob on the pacemaker?
I have seen 3 lung consultants The first made a decision on an old xray in 2010 which at that time I had pneumonia? He also stated I had a pacemaker which I don't! Insisted I had 3 Oblation's Not ablations. The second was a lovely lady that explained everything really well and sent me for a sleep apnoea test. It was confirmed I had PH and told that there is not a lot on the market that I am not already taking for my heart that could help it? The third put the blame on the fact I am on beta blockers and should be on Calcium channel blockers and dictated while I was there that an appointment with my cardiologist has to be made to discuss changing my heart tablets. I have only been on CCB once and it was a short time so I cannot remember if I reacted to them. I do not do very well on some drugs. so far I have heard nothing from the cardiologist and my GP told me the lung consultant told them to change the tablets but not what too? I said he wanted me on CCB but they will not do it with out the cardiologists say so!
I have spoken to a PH specialist about the fact that my PH is low to middle pressure but with my other lung and heart conditions as they are now does that impact on the SOB I suffer? He confirmed that it would compound it far more than anyone with good lung function with PH.
As for secretaries I have had all sorts of problems getting hold of lung one always seems to be away or off.
I used to teach customer service to call centre/shop staff and the need to be in control is so important to get something across but sometimes a good firm tone will get things done. Its the frustration and pain that is getting me niggley
Worse and worse I don't know how I'd manage to stay cool if i was in your shoes Offcut, it sounds very complex and with so many people saying different things, especially mad things like you having a pacemaker when you don't
Get the d*mn GP to refer you to a pain specialist. Pain really can drive you crazy - I do hope you can get it under control.
Dear Offcut I do so sympathise with the alas not uncommon way in which you have been treated. Although heart and lung issues can cause problems regarding strong analgesia your GP must be aware that he/she can still safely prescribe significant levels of pain relief.
I hope that you are able to resolve this to your satisfaction. If you cannot get the relief that you need then ask, insist, that you are referred to the local pain clinic. These are generally headed by an anaesthetist and they do know how to help even when the patient has heart problems and reduced lung functions.
I think that is going to be my main question as any of the opiate types do not give me 100% relief I have problems with anaesthetics I have woke up in the operating theatre twice and never feel drowsy or ill after. Anaesthetist must hate me for that.
You must be more insistent and like Matt Cas get your pain properly treated. As well as any heart or lung consults you should see a Rheumatologist and a pain specialist. You are entitled to this and must insist on it. I hope you get the right treatment and relief from the pain.
It is making me a stroppy and I am not a stroppy person normally I like enjoying what I have in front of me. There is always someone worse than me coping better?
Hay offcut is there not a pain thing like i have a neddle stuck in my arm every six months cors i get v.bad pain in top arm shoulder locks cant move it much frozen shoulder for back?
Dear me Offcut that sounds truly horrendous and so very painful for you. Doctors do have great trouble dealing with more than one thing at a time and even hospitals never look at the bigger picture. I get very angry and frustrated on Pete's behalf. Could you or your wife write it all down and get them to read as well as listen. Something needs to be done for you and you cannot continue to be fobbed off.
I do wish you well and hope you finally get somewhere. Now, go and put that kettle on.......
So sorry you are in pain offcut & having to deal with the stress of trying to sort things out. What happened to the idea of case managers? Do you have one ? Can they connect across the different health xystems & specialists? If not ask yoy gp if they can write to the consultants for answers to your questions.take carelove mx
When they told me what he wrote to them and I explained what he wanted me on, they would do anything without the cardiologist. They do not seem to be able to communicate with their own reception staff? I think I am just getting narked with everything at the moment?
Wonder if you have been prescribed any muscle relaxants? I was put on them when suffering excruciating pain trying to unlock my back muscles when it was taking me up to 2 hours to get out of bed. I was told by a hospital nurse that there is a connection with back pain and sob. Hope you get sorted soon. Joyce
I have taken Zopiclone which has helped a little as I get about 3 hours real sleep but have to taken rarely. Most muscle relaxants can interact with my 14 prescriptions I take! I had a quick look and it seems 3 interact with them that I could see?
It's like going round in circles and very frustrating, but you should never give up, and I hope you get someone to look at all of your problems and get something sorted for you - best of luck.
Thank you. I woke with my left ankle not liking weight on it now! That could be me compensating when walking or standing? Maybe the circle will get so small I will end up like the oozlum bird?
Hi Offcut I know what your going through with your back I was due a spine block on Thursday they called me Wednesday at 6pm to cancel no beds was the reason. I think you would benefit from a spine block go and see your GP and ask to be referred to the pain clinic
Oh my offcut, appears we are experiencing the same maladies. You mentioned recently that you had dealt with compression fractures as I was at that time, and shingles also. Had no idea how all these things fit together!!! The shingles affect your nerve ending which cause the muscle spasms to be more intense and almost unbearable while attempting to compensate for the bone structures inability to support our weight while sitting or standing. However, once I'm standing I am able to walk around for a little while without much pain unless I lean over, then I'm back on the bed. But I don't want a stroke or blood clot in my legs so I get up often through the day and move,around. Don't want pneumonia either. I was determined not to take the pain meds as they always seem to cause constipation and just make me feel goofy, like there isn't enough to deal with but I have to say, I finally had to give in as the slightest movements were debilitating and got no sleep at all. At this point I , at least have a few moments in between and the pain, probably the meds, and an easy space. Stomach is still a mess. It's quite puzzling as my daughter and family seem to think I'm dreaming this up!!! Try to say out of their way so as not to irritate them more but they are on the go so much they are rarely home! ! Thought I'd never say it but think I'm near the time to enter an assisted living centre.
Goodness, you can't look like this and be dreaming it up!!! LOL
Have learned a lot through this episode, that shingles also affect your joints, thought my arthritis was really getting bad, had swollen places on my arm near the rash, oh my goodness, a real dark journey, not real if you know what I mean.
It sounds though, that your Drs stay in touch more than here and consider your lung and heart condition. After my GP saw the rash he didn't even review my file about the risks for heart and lungs, just sent me on my way with a script for antiviral med, prednisone, tramadol for pain and an antidepressant. Let me ask, is it not "normal" when experiencing pain and more than one health issue to be somewhat depressed???
I about had a heart attack when his nurse announced I'll make you a referral to a psychiatrist. Well, I maybe old and eaten up with health issues but my sanity is not in question!!!! Hummmmmm, kinda makes me wonder if my daughter hadn't talked to him about getting me commeted!! Just kidding!!!!
Well, here's hoping and praying for relief for both of us. Will watch for your updates.
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