Thursday, 4 August 2011

Personalised Pain

Photo Copyright: Maggie May


How could anyone ever describe pain? It is even harder to imagine someone else's pain. It is a personal experience and surely everyones' experience of it must be different. There are different types of pain. Niggling pain, nagging pain, hot, searing pain, stabbing pain, dull, aching pain, cramping pain....... the list is endless.
My pain over the last few weeks has been almost unmentionable and almost unbearable. I put much of it down to arthritis and sciatica and ageing aches and pains. However, it soon became apparent that that there was something very bad going on as well as these other things.
Imagine having a knife rammed somewhere where the sun don't shine! Yes...... not nice. On the right side of the knife the blade is jagged and catches with every movement. A pain that makes you feel that you are being tortured nonstop.
This was the only way I could describe the pain that was coming from the tumour on the coccyx (tail bone.) There isn't much room down there anyway. Imagine having to go to the toilet and the pain that that caused me.
If you find this imaginary exercise too unsavoury, then I'm sorry but that is the only way I could describe it.

I was dreading my daughter coming to see me in this state, let alone my grandsons.
However, by the time they arrived, a few days ago, they found me rolling about like a wild animal and yelping, moaning and pleading for help.
My husband and son and my granddaughters were looking on in horror and every one thought I was not going to be here too long.
I have been backwards and forwards to different departments of different hospitals for a few weeks now and all I knew was, that I had to wait until August 11th for my radiation details to be calculated and put into the machine. This is a very delicate operation and cannot be rushed. If mistakes are made with this treatment then it couldn't be rectified later. I knew this and understood it. Every day seemed like a week, though and I was becoming convinced that I wasn't going to make it long enough to get my radiation. It seemed too far away and I knew I couldn't hang on with this pain much longer.
How much pain could anyone bear?

My daughter knew that there were certain drugs intended for the treatment of particular conditions that could beat this type of pain. It had been found out by accident over the years, so she rang up the Macmillan nurses to ask about it.
They got in touch with St Peter's Hospice which is an organisation that most people know to be a charity who help people with painful, life threatening diseases and they have charity shops all over England to support all their good work. They have hospices, where cancer patients can go for respite care and stressed relatives can receive advice and support, too. One of the great things about these nurses is that they have expert knowledge of drugs that can help people stifle the symptoms of cancer. Lets face it...... once we know we have this illness and have got the necessary treatment, we don't need to keep having to experience the pain dragging on and on relentlessly and dripping like a constant tap. Eventually pain can consume all our thinking and feeling and engulf our whole personality so that we have no energy left for anything else.

It was because of the precise description of my pain, that the nurse who came to visit me in my own home, was able to immediately recommend a very low dose of a drug for depression. The wonder drug for me turned out to be Amitriptyline. This drug can affect the messages of nerves to and from the brain to certain sites in the body that produce pain.
My doctor was asked to write out a prescription for 10mg. to be taken every night. This tiny tablet that leaves my mouth feeling like its full of cotton wool every morning, has given me a good nights sleep for the three nights that I've been taking it and I have managed to cut down on many other of my pain killers, including morphine, which I was really scared about taking.
If this hadn't worked, they were going to try a drug that prevents epilepsy. Apparently this drug can cut out this kind of pain message to the brain too.
Isn't it marvellous what these drugs can do? I haven't much patience with people who would love to go back to the *good old days*. They wouldn't have been very good for me.

It must be because of other peoples' pain that doctors found out by trial and error that sometimes the most unlikely drug could help with other types of conditions. So maybe my horrible description of my type of pain might help someone else in the future to get help.
Please, if you know anyone battling with severe pain, ask them to get some kind of advice from a specialist in pain relief and ask if they could try some of these unlikely drugs.
Ordinary GPs do not know enough about this complicated pain relief. Out of three of my doctors, only one told me this drug might help and one said it definitely would not.
I can now move forward and am within sight of my radiation date and know it is going to really happen now and in the meantime, my quality of life has improved tremendously.
We must always get a second opinion and I cannot ever thank my daughter enough for urging me to try this drug and for leaving a desperate message on their answer phone.




38 comments:

Twain12 said...

i'm glad to read that this medication helped and i will definitely keep your advise in mind. Sending my love ♥

Akelamalu said...

Pain is a very personal thing. People can have a high or low or something inbetween pain threshold so nobody can say what's right or wrong. I'm so glad your daughter was able to get you the medication you needed Maggie. I have to say at first I thought you were talking about Cannabis! I've heard that is good for pain relief though I've never tried it for that. x

Formerly known as Frau said...

Maggie I'm so sorry you had to go through all this..it just isn't right. I hope and pray you are continuing to feel better. ((Hugs))

Glenda said...

Maggie, I'm so very sorry you're having to go through this. You can get so sleep deprived when you're going through this type of pain and I'm glad that the new drug is helping that also. You'll be in my thoughts and prayers.

Nora said...

What a god awful time you've had, Maggie. I didn't realize things were as bad as that. I did miss you lately, but I had no idea what the reason was for your absence. Thank goodness for your daughter is all I can say, and for that drug you're now taking. What a relief that must be, you poor thing. I'm so glad for you that it exists.

Love and hugs!

Teacher's Pet said...

Thankful for your daughter's persistance in contacting someone...leaving messages...getting the meds for you that have helped you endure this pain, Maggie. Your description of the pain brings tears to my eyes...to think that you endure such searing pain is unthinkable. I'm thankful for medications that help alleviate this pain for you. I look forward to August 11 and your radiation treatment....hoping and praying that you will have good results...and am so very thankful that you are not feeling the intense pain that you suffered with. I pray that pain NEVER returns to you. I love you Maggie.
Jackie

cheshire wife said...

What a dreadful time you have been having. I can not believe that your GPs were not aware of this indication for amitriptyline. The GPs in the practice adjacent to where I work prescribe it for pain relief all the time. Fingers crossed that it continues to work for you.

CWxx

Valleys Mam said...

((((((((((((((((maggie))))))))))
blessings and light and thoughts and prayer

TechnoBabe said...

Your daughter arrived at just the perfect time. I am so glad you have gotten some relief now.

Expat mum said...

Thank goodness you've found some relief. I have a friend going though the same thing but so far not a lot is working.

Debbie(single;complicated) said...

I am sorry for what you have been through and glad you found some relief!!

Happy Frog and I said...

We've never met but one of the things I have come to love about your blog writing is that no matter how bad things get for you, you always look for ways to help others through your own experiences. If I had an ounce of your inner strength I would count myself very lucky indeed.

I'm so sorry that you are having to go through this but so pleased that there was help out there for you and that you have been able to find away to control your pain. I am so supportive of the incredible work that Macmillan nurses do. I'm so glad they were able to help. x

Mimi said...

Oh Maggie, you poor pet.
I had no idea it was this bad, it must have been awful to be in that pain.
I'm so glad you've found a drug that works. Hospices always seem to have great ways of dealing with pain.
I hope the radiotherapy is not too severe. Love, mimi

Nick Thomas said...

Thanks for your message. Poor Maggie, I feel a bit of a wimp now, after realizing how bad things have been for you. Glad you got some relief. Take care.

Brian Miller said...

a knife somewhere the sun dont shine...ohi think you dida good job of describing pain...yikes....i amsorry you were in such pain..i am glad she was able to get the meds to help...i can hardly imagine...

Retired English Teacher said...

I hardly know what to say. You have been through so much. I just hate that you have had to suffer so. Your daughter is an angel who went to work to get you some relief. Thank God there are places who know about treating such pain and make the treatment available for cancer patients.

Maggie, may God bless you with some peace during this time. I will keep you in my prayers.

Midlife Jobhunter said...

Cheers to some relief. So glad your daughter encouraged you. So glad you took the new med.

Take good care, Maggie.

Jeni said...

What a relief to read towards the end of this post that you actually did find something that gives you some relief!!! I can relate though to the pain and anguish you described as after my first surgery, 8 years ago this summer, I appeared to be healing quite well and then, all of a sudden, I began having these horrible pains in my left buttocks region! Sharp, stabbing, and with sort of a "rolling" effect to 'em too as they would start at the spinal cord -or so it seemed -and then spread in like a sharp wave across my left butt! It took the doctors 3 weeks before they finally found out what was causing the problem -two herniated discs in my back! Then they gave me lortab for pain plus prescribed physical therapy and that did help, yes, but it took a long time to heal and in the process the damned lortab was also a bad thing in that it constipated me horribly so then I had yet another painful problem to contend with! ARRGH! That was totally a summer completely from Hell for me and if you pain was anything at all like what I had, well, as I said above, I am really glad you were able to get a good bit of it abated for a while at least. Hope they are able to give you more permanent relief from all that is causing this in your system very soon now too. Pain relief is good but curing the problem is even better. Will keep you in thought and prayer Maggie, that things all come together in that manner for you -and soon! Hugs, too!

SueAnn said...

Oh I am so glad that you are receiving blessed relief from that pain. How awful for you!!!!!
You are in my prayers for sure!
Hugging you gently
SueAnn

Clare Dunn said...

We love you, Maggie!

xoxoxo, clare +

Suldog said...

Thank the Good Lord you are able to sleep at night!

Pain is, as you say, personal and not easily described. All I know is that folks who try to suffer through it, when there are chemicals available to alleviate it, are less than brilliant. Having been through serious dental woes, and driven to tears and near-suicide by same at one time, my best advice to anyone offered pain medication is TAKE IT. Get it as quickly and in as large a quantity as possible. No one need suffer for some supposedly noble purpose.

God bless you, and God bless the folks who helped you!

Mitesh aka SM said...

it changes person to person
nice post

Rose said...

Dear Maggie, what torment you have been going through! I'm so glad you have found something that has alleviated the pain somewhat. I'm glad your daughter was persistent and that you found a nurse who was sympathetic and so knowledgeable. I think too often we think we have to be stoic about the discomfort, but with so many advances in medicine today, we shouldn't have to be. I think there are some doctors, too, who aren't terribly empathetic.

I thought of you yesterday and today as I had a colonoscopy today, one of my least favorite procedures--I'd type those words in bold if I could:) I was miserable preparing for it, but I thought of you and all that you have gone through and told myself to stop being such a baby. The good news is that all is well and I don't have to go through this again for another 5 years! My wish for you is that your treatment is successful and you can look forward to happier and pain-free days.

Sending hugs your way,

Rose

Wendy said...

Oh Maggie, I am so sorry you had to go through this! But so happy that you now have some relief. Yes, I agree - we have the technology, the drugs, let's use them! I don't know what people did years and years ago!

God bless you and I hope you find continued relief.

lailani said...

So so glad for your daughter calling someone else. That sounds excruciating! Praying that you continue down the pain free path to next Thursday's procedure!

ChrisB said...

So pleased you found some pain relief Maggie. You are so brave, thank you for your inspirational post xxx

Rae said...

Oh Maggie May, I am so sorry you have been in such pain. But so glad you have found something that helps - and to think it is an anti-depressant! Macmillan nurses are wonderful aren't they? My cousin has experience of them and they seem to be so good.

I am a huge fan of the Peter Hospice shops - in fact I seem to spend rather a lot of my money in them... but at least I can do so with a clear conscience!

Rae said...

Oh, and I have always believed that pain ought to show on one's skin so that people can see what your pain is... then we could have a colour chart to match pain up to!

After all a tooth abscess shows nothing but is seriously painful, but my best big multi-coloured bruises happen without me noticing - how annoying is that?!

Retiredandcrazy said...

Oh Maggie, I'm so sorry. I've been away for a while and didn't know you had been so unwell. All my love, Ann xx

Gail said...

So glad to hear you found something that helped. It sounds really excrutiating. It's always surprising to realise in this day and age that people still do suffer a lot of pain - there needs to be much better training and awareness.

debsdigest.com said...

What a relief it must have been to find something that helped. My very best wishes - and prayers - go with you. xx

secret agent woman said...

The tricyclics have been around for a while but I had no idea they were useful for pain. I'm so glad to hear it is helping you - what a miserable situation to be in.

Hilary said...

Oh Maggie. I wish I could give you a big (gentle) hug from across the miles. And while I'm at it, one for your daughter and the cooperative medical staff too. I'm so sorry you've been huritng so badly. And so glad you have some relief. You're in my best thoughts. Wishing your strength.

ladyfi said...

OH, how I feel for you. I can't imagine having to go through this. Thank goodness you are now getting some relief!

Carol said...

Dear Maggie...I'm SO very sorry you are going through this. Thank the good Lord for medications that work. Too many drs. are clueless. Hospice has been with my mom for over a year now, helping to manage her pain. I thank God for them. I pray you become pain-free asap~

mrsnesbitt said...

Oh Maggie - am so pleased for you that the cause of this horrible pain has been identified!

Connie Rose said...

Hi Auntie Maggie,
Mom said to tell you that she’s seen your posts on Nora’s blogs for some time now, as well. Thanks for checking me out. I love house rabbits – in theory anyway, since I’ve never met one. I think I’d be curious, more than anything else. I’m a lover not a fighter!
I couldn’t send this comment as a reply to yours so I’m posting it on your blog. Thank my mom for being so inventive as to find a way for me to say Thank You!
Hugs,
Beeg

Iota said...

The Macmillan nurses sound worth their weight in gold.