I was just wondering, I have a couple of different issues and have an appointment with a Private Pain Specialist today.
I have Chronic Painful Bladder Syndrome, Bladder Reflex, Kidney Reflex and a Duplex Kidney on my left side. This causes me to get CONSTANT UTI's that moves up to my kidneys and morphs into Urosepsis. The years of damage has causes constant pain in my back/shoulder and sometimes my leg... I have tried physio, medicine, meditation, tens machine, hot/cold presses and many others. I do remain active ( work full time ) and love to go swimming + little other bits at the gym. I am just struggling to cope though. I know it sounds stupid but I just don't want to go to this appointment and him think I am wasting his time. I am only 26 but the pain is starting to interfere with my life. I struggle to stand for long periods of time, I can't really walk my beautiful pup the way she should be walked. Even standing washing the dishes, I will sometimes cry due to the pain! I currently take co codamol 30/500, gabapentin 300mg, diclofenac 50mg and duloxetine 100mg ( this is also an antidepressant ).
I was just wondering if I could have some guidance so I don't sound like a spoiled brat!
Thank you guys!
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1994Nicolette
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Sadly I can't afford private consultations, but many do or have insurance. I understand your feeling as I have had problems due to arthritis from a young age. You do seem to be taking a lot of tablets for pain , these have side effects some can literally cause pain & illness. I take pain releif and most don't work unfortunately but they lessen the level of pain. There are many herbs that do this also so worth a try. I am about to undergo surgery to releif the problems with my knee but its only one pain issue. That does not guarantee a fix for all. Do what is best for you to cope with the pain but don't expect miracles is what I would say. Best Wishes for your appointment, a tip don't hide your feelings.
Thank you for getting back to me, sorry for the delay in response!
I would never be able to afford private health care, I just work for a private hospital so have lucked out and they provide insurance with a small access!
I will be going in for a review with the Sister at my GP on Monday, so hopefully get something a little bit more manageable/reduce some things. I am due to have two procedures on for my renal issue and another to deal with my bladder issue. So fingers crossed that would make a difference, even a small one!
I hope your operation goes as smoothly as possible and your rehab is manageable!
Thats nice to have a small cover with the company you work for. I have just been offered a chance to attend a knee research project I can go if I don't get called in for treatment it starts on March the 10th. Could be interesting. Enjoy your day more storms forecast for weekend so button down the hatches as they say and I hope your waterwoks & renal issues get sorted soon. Kate
Hi Nicollete . First things First Nobody should deem you as spoilt brat . You obviously have various issues pain wise feeling the way you do ie a bit negative doesn't help you mentally cope with the pain etc . Just to let you know where I am . Im 57 and have suffered various pains since my 20`s , Mainly of the Arthritic type , that and a recent emergency triple bypass , Degenerative Disc disorder over 4 discs so far . It was for the back pain I was put on Diclofenac and various others including Gabapentin , Morphine etc.
To make comment on the 2 we both used 1st Gabapentin 300mg I assume is over the whole day ? I was on that for only 2 weeks and took a really bad turn with it , I felt completely tired out and confused , dizzy etc. I came off it . Now onto the Diclofenac >>> I was on it for nearly 3 years , 325mg/day Until I collapsed on the beach walking my Digger . Id had a heart attack and was rushed to hospital where they realised 3 of my main arteries to the heart were collapsed , the Surgeon in attendance was very good and went through what medications I was on as soon as I came to the NSAID>Diclofenac his head went up and that sigh you know isn't good ." Well your off that for life Frank!!} Why ? Because ~ and I shouldn't say this ~ that's why your here now !!. That's when I had my emergency bypass .
Bearing in mind you are on much less than I was { not sure how long you have been taking it either }I was informed that with this type of medication like many other drugs has side effects that affect people in different ways but NSAID`s can have some serious risks .
Your GP should be monitoring your drugs anyways but in my case I was told I should never have been on Diclofenac for that long on that dosage without having a look at things every 2/3 months . My then GP never once mentioned it .
Im not sure if you are based in the UK as I am but back in 2013 , all GPS across the UK were sent literature based on tests on Diclofenac and one other Meloxicam I think it was could increase the risk of a heart attack or stroke in some people , it can also as a side effect cause abdominal pain , heart burn , indigestion and other things , I say that because you suffer from abdominal pains , as I say I have no idea if 50mg will cause any of the above but you need to have it checked even requesting and ECG/EKG test or Angiogram { that's what I had as soon as I reached Casualty} which should tell straight away if there are any early signs of a potential problem . Have you suffered any chest tightness ?
Anyway you've probably fallen asleep reading this lol. Don't treat it lightly you might be completely fine with NSAID`s , I wasn't .
Main thing is do Not feel silly or like a spoilt brat at any age if you have genuine concerns about symptoms or worries , always ask the question and if your not happy or feel its not been answered completely or in a way you completely understand PUSH even get a second opinion .
Its "your" health ..
All our GP`s are under an Immense amount of pressure and are also human beings whom perhaps miss things or forget to say something because of the pressure they are under . Our NHS was Never designed to cope with all that it does nowadays and as I say because of that mistakes are made { pretty big one in my case which was only minutes from me not being here } .
The Mind is the most powerful tool in our bodies when we are down,worried, confused etc then its stops us functioning as well as we should , then the stress and anxiety begin . I know I go through it every day .
In your case Nicolette you have some major , genuine concerns that you Need answers to and until you get those answers good or bad then your not going to get rid of those concerns and progress to some better focus .
Thank you so much for taking the time to give me some insight!
I'm so sorry for what happened to you, it must have been a horrible time and knowing now it could have possibly been prevented - is horrible! How are you getting on now?
I have been told that Diclofenac has a very high content of sodium. I had tried something called Naproxen but that really made things worse. I was being constantly sick and actually developed an ulcer. So this was the alternative... I do have an appointment with the Sister at my GP, she has been the most helpful person out of all the doctors that I've seen. She actually listens and understands. My partner has Cystic Fibrosis and she has been with him since he was little and we've been together for 11 years. So she has a soft spot for me hahaha.
The appointment wasn't very helpful, he really just told me that what I was doing was all that could be done. I just don't want to live like this anymore and the pain clinic was kind of my last hope. I am completely devastated but I will just try to keep going with things and see how I get on. I am due to have two procedures with regards to my urinary/renal issues. So this might make a big difference **fingers & toes are crossed**.
Thank you for listening & again thank you for you time
I should have said, the one thing I did get away from the pain clinic was a recommendation for something called Capsaicin Cream ( the extract of chilli ). He said it has the same effect as a hot water bottle, which is at the moment my best friend!
I don't know if that would be any use to yourself!
I agree about the diclofenac being a bad drug to be taking for any length of time. I needed to have a colonoscopy a couple of months ago, and when the consultant saw Diclofenac was on my list of medications he was horrified. I didn't take it very often, 9for arthritic pain)but have now asked for it to be removed from my list.
Now about Gabapentin. This is a drug purely for nerve pain - nothing else. I assume your condition must have affected your nerves. I needed to take this drug due to a severe attack of shingles which started end August 2019. Most of the nerve pain has subsided apart from some remaining in my thigh. I currently take Gabapentin 300mg one tablet morning and evening. When the pain was at its worst, I was actually prescribed 900mg Gabapentin per day which did help a lot. I have been able to reduce this very gradually under supervision from my GP. Perhaps you need a stronger dose of Gabepentin?
I also take Duloxetine for peripheral nerve damage in my feet which helped a bit at night. It was prescribed for that, not for depression. The fact sheet in the box tells you what Duloxetine is for, and it does include depresseion, but also peripheral nerve damage.
It sounds as if your medication needs a good overhaul via your GP. However, your pharmacist would also be able to give information and advice - mine was very helpful!
I've also been warned about the Diclofenac due to the high salt content, it's such a bizarre thing. I wonder why it such a widely used medication with all these problems!
The Gabapentin is for my kidney and bladder. I do have severe damage in my kidney especially, from all the infections that I've had they've managed to eat away at my internal tissue and it's just not regrown the way it should have. All from E-Coli. Urosepsis has ruined my life!
The Duloxetine is used for both depression and pain management. I've been on it a little while and I do think it has made a difference, unfortunately not for my sleep but I can manage without.
I am going to see the Sister at my GP practice on Monday, , she has been the most helpful person out of all the doctors that I've seen. She actually listens and understands. My partner has Cystic Fibrosis and she has been with him since he was little and we've been together for 11 years. So she has a soft spot for me hahaha.
The pain clinic appointment didn't help at all. He has just said to continue doing what I'm doing... I'm devastated, I was so hopeful that he would be able to give me some advice and guidance. He has recommended and sent a report to my GP to prescribe something called Capsaicin Cream ( the extract of chilli ). He said it has the same effect as a hot water bottle, which is at the moment my best friend!
I hope that you have many pain free days ahead!
Thank you for taking the time to respond with you guidance!
well i take the same but not the diclofenac but whatever you do is dont stop your exercise i am on 3x 300 a day gabapentin max dose and duloxetine 20 mg a day but only take it at night to help me sleep if right in saying on license it is a antidepressant but is all so used of license as a pain relief but to be taking 100 mg is way over the guidelines for it and i take tramadol 2x50 mg every four hours but there is a 100 mg slow release as well i did try it but it didnt work so went back on the the 50mg ones and co codamol 30/500, 4 x a day max dose but i also use a jell i get out the pound shop freeze gel on my throbbing neas it works well i found about the jel on facebook every one was giving it a grate revou so got it . but at the end of the day we are all different as someone said before you need to speak to the doctor and see were you can go on your tablets . my doctor put me on different tablets to find the right ones for me it took time but it doesn't kill all the pain but i live with it thats why i yous the jell as well on top just to help with the pain but please dont stop moving about and try and walk more as well i keep pushing myself each day just know your limits and if you can try that bit more than your limits each day i no i wake up crap but i keep putting a smile on and get up and go every day i set myself a target to do something each day i do hope you can get sorted out with your tablets
I will always try and stay active, I have always loved to be fit and LOVE swimming. I used to train for Scotland, so it not like me to stay inactive for any length of time!
The one thing that the pain clinic did recommend is something called Capsaicin Cream ( the extract of chilli ). He said it has the same effect as a hot water bottle, which is at the moment my best friend! I don't know if this would be any use to yourself for your knee?
sorry for the late reply on good days i can do things like this and my lap top the same as me ok one mint then the next its had it that cream your on about is a hot one but the one i was on about is a cold one its cold on the start but them the cold gone my grandson got a squint foot and at night it hurts him so the other day i gave him a tub and he has it now on at night and when he going school my problem is ive got 10 discks gone in my neck and my spine they have all crumbled away i loved working when i did i would do a ten hr night shift go home and get about 3/4 hrs sleep and then get up and do gardening in the day then get another 3hrs sleep and back at work at night my doctor tried to get me to stop working but the pain one for a bit then i went back and after a time i was crippled with pain and now ive got to live with it even today i do try but i doesnt work and i end up on my back for a few days but thats life for me now so it lives with me and not ruling me well going its hurting now
I am really hoping the cream will make some kind of difference!
I’m so sorry that you’re in so much pain. I can’t imagine what it must be like to not be able to do the things you love! I’m sorry that they’ve not been able to help you in anyway! I really hope you find something or someone to help!
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