NOT THE SAME!

Hi anndanv

What are proactive GP! And goodness, the wonders of modern technology. Photographs flying hither and thither, electronic prescriptions zipping between your GP and the pharmacy, The end result may be a pain-free night. This kind of scenario was literally a fantasy just a few years ago. Now we’re almost taking it for granted. I think it’s miraculous. 

I’m slightly confused about what’s going on here, though. It sounds to me as though you’ve been in pain at night long time, yet you haven’t complained about it so nothing is been done. If you excuse me, that sounds a bit crazy. I always see pain as something that needs to be dealt with. There is the pain itself, which is debilitating and unpleasant and stops us sleeping. But there’s also the question of getting to the bottom of what’s causing it. Maybe I have misunderstood, I hope so. 

At any rate, I wish you a peaceful night of uninterrupted sleep. I hope you get a rapid response from the dermatologist so that you can deal with this unpleasant lesion on your leg.

Lots of love xxx

Hi You are right, it is miraculous! Also my GP is and always has been very proactive and supportive. I did mention a while ago when I think it was Tvman who commented on how good my GP was that we have known one another for a long time. He was my mixed doubles badminton partner for many years before he bought into the practise and moved here! You are right again about me having this pain for a long time but incorrect (you can't be right all the time! Lol!) about me not complaining about it! My GP, The Pain Clinic and the Palliative Team from the hospice have tried almost everything to try to sort it out but nothing works for long!

When the melanoma was removed from my shin last time, it was so deep that when they did the WLE (wide lesion excision) they had to go down to the bone and even after using a graft from my hip, the nerves were on the surface. Then a while later, I had two tumours on my thigh and they did a groin dissection, on the same leg. Then if you remember last year I had surgery on my spine, which has also resulted in nerve pain. I've had Morphine, sevridol, Gabapentin, Pregabalin, OxyContin,Oxycondone,     Lidocane patches, Accupuncture, physiotherapy, hydrotherapy and quite a few different types of sleeping pills like Amitryptaline which I do not like taking! I've either had an allergic reaction, had severe sickness and/or diarrhoea, migraines etc you name it, I've had it!

So you see, I have also been proactive and would always say if I thought there was something that could be done! The days of suffering in silence are well gone Daloni! This flares up like my osteoarthritis and it's hard to cope without sleep. Seemingly there are a few more opioids I haven't tried, so onward and upward! Sorry (again) for the long post peeps!

Enjoy today's lovely weather!

Take whatever you can to get rid of the pain is my motto.

i tried all the same as Annette when I had my bad back but the only thing that really worked was the operation and I can now walk ok.

i am taking cocodamol  now for my headaches which does help I was struggling just on the paracetamol though that did work ok for a while.

the trouble is there are always side effects tiredness, constipation and nausea and I have to take other things for those.

i still woke up with headache and my BP was up but definitely worth taking the tablets to make life bearable.

i will enjoy the sunshine today and go out in the garden 

Ruth xxx

anndanv I can't think of many things worse than intractable pain, and nerve pain seems to be incredibly difficult to manage. Lack of sleep is literally a form of torture, it's a miracle you're able to hang on to your sanity let alone your great sense of humour and positivity.

The very best of luck with all this. I hope you'll get some good quality sleep, pain relief and quick answers from your Dermatologist.

xx

You did the right thing to send off the picture of your leg hopefully they can diagnose from a picture but maybe the answer is to get it removed and the smaller it is the better and you can then get a proper diagnosis 

love Ruth x

Oh my goodness anndanv that sounds a bit of a worry but it also sounds like your medics are amazing.  I hope you have an answer soon from your dermatologist and the pain is sorted.

and I hope you have a wonderful sunny day, it’s glorious here in the east today, so hopefully you can enjoy your garden and get some rest and recuperation like daloni yesterday!
sending you love and positivity today xxx

Hi Annette

You and I both suffer from nerve pain and when it starts, there's nothing to help cure it apart from anaesthetic!

Lately because of the work I'm doing, I have pain down my shin, down the back of my legs and of course the pain across the bottom of my spine which prevented me from having the same or nearly the same back surgery that you have. There's absolutely nothing to halt that nerve pain. My doctor agreed with me when I said to her that if my MST was increased to stop the pain, I would be zonked out. 

I take pregabalin too, as well as amitriptyline which was given to me about 8 months ago and I was told it was another pain killer. Strange that some medication acts in a different way for some people. Pregabalin is one tablet that I take for pain yet it's much sought after by some druggies as is MST. Weird!

I wish someone would come up with a pain killer to sort you out Annette, you deserve it after all this time in pain. Keep up the shining personality, don't ever change that!

Tvman xxx

Hi and thank you to everyone who replied! The trouble with nerve pain is that usually IF  a drug helps it to works and get rid of the pain, you cannot function! I don't want that, I want to be able to have proper conversations with everyone and only sleep at night, not all day! So it's trying to find somewhere in between! I was told to take my first pill at 9.30pm which I have done and thought I'd feel at least a bit tired by this time, but I'm ever hopeful! That's why I'm on the site "early" tonight as I expect to be asleep at the usual time I check in!

My GP gave me a quick call this afternoon to say the Dermatologist is only working part time at the moment, as the clinics are all closed just now and he's not sure when he'll see the email. So we wait! He's bound to check his emails at some point! My GP will keep me posted!

I have been thinking for a couple of weeks about posting here because I finally got the results of the scans taken in March. They said all looked stable and similar to the last scan except for a small lesion that is on my liver. For those who maybe don't know, the treatment has given me cirrhosis of the liver and they have been monitoring it closely. Now they say the lesion is very small so they will watch and see. However instead of 6 monthly scans, I'm now back to 3 monthly scans again. I have only had 2 six monthly scans so far and that extra 3 months between scans does make a difference! I'm not worried because it won't change anything. I'm just hoping things don't always come in threes!

Thank you again for taking the time to reply, especially those who aren't having a very good time themselves at the moment! (You know who you are!)  Take Care 

Hi Annette

I sincerely hope you're well in the land of nod right now and dreaming of all things nice.

I'm working a lot at my plot, well in the afternoons and early evenings, I don't start until the early afternoon to let my body recover from the previous day. It's nerve pain and arthritis but I don't mind because I'm looking forward to digging up potatoes and carrots, picking peas, mangetout and broad beans and lifting fresh crunchy lettuce. No pain no gain. 

Just about every part of my body is so sore but when I'm nipping around in my motorised scooter I'll have a smile on my face. I do so wish I could share it with you and my other friends on the site. I'm staying as positive as anyone can be, I'm a cancer sufferer with hope. Of course I realise that many of you are going through a living nightmare and in my eyes you're so brave, month after month suffering side effects that you almost dismiss as coming with the territory. 

I can't remember which thread I started in, now it could be that I'm in the bravery thread! Wherever I am, I take my hat off those whom I have just described and also to those undergoing a mental torture also. I think I've said this before but I'll say it again, I'm proud to call you my friends.

That's it, no more  Take care everyone.

Tvman xx

Hi anndanv

I am suitably chastened! I think I mentally block out what I fully know about your pain because I just can’t bear to think about you suffering so much. And I struggle to square how someone who faces so much pain every day remains so positive and so supportive of everyone in our community. You are my shining star, Annette.

I am sorry I didn’t reply yesterday. The day seemed to run away with me somehow after a very bad night. Yes, back to pain. The night before last, I woke about 1 am choking. I felt as though I’d inhaled saliva, perhaps because I stopped breathing in my sleep. It took me a good couple of hours to get things under control again. I was coughing and spluttering, so I decided immediately that I had the coronavirus. Then I looked to the bed beside me where I had the post opened earlier. Among the letters I received was a copy of my do not resuscitate order from the hospital. I did get back to sleep eventually but it kind of threw the whole day off.

It’s prompted a change in how I manage things. The night before last I’ve taken painkillers pre-emptively before going to sleep in order to get through the night. Last night I decided to wait until I woke. I got through to about 3.30 and came to the surface feeling like I’ve been wrestling with the sea monster called pain. My little sister woke up and came through with a nice cup of tea. The top up painkillers acted quickly and it was preferable to the choking incident.

Gosh what a sorry tale. I feel a bit foolish. In actual fact, I am making real progress here. The pain is reducing and I’m definitely becoming more mobile. Things are moving in the right direction.

I’m so sorry you’re in so much pain, tvman. I can imagine people telling you not to try to do so much? I absolutely get why you carry on. We have to carry on living, don’t we? I think sometimes people want to reduce us to one dimensional bodies, waiting patiently to die. But we’re not. We are still full of human beings with ambitions and hopes and a need to fill our days with something meaningful.

On which note I’ve been sewing. My sister and I have produced one pair of shorts, one wraparound miniskirt, one wraparound maxi skirt, one hat, and four crocheted coasters. It’s a veritable sweat shop round here.

Lots of love to you all 

xxx