Hi all, went to the Gp today to sort out what I think is gout. He agrees it looks like it. He has put me on 50g diclofenac 3X a day and have to go for blood test on Tuesday. Praying it helps over the weekend! Have asked for a referral to a pain clinic as the specialist said an op is too risky and it is now up to me to manage my condition the best I can. I have spondylothesis and severe arthritis in the spine. I am taking 30/500mg co codamol 4x a day. I am in pain every single day and am up at 5am as the nerve pain in my leg is so unbearable I have to get up. What I am wondering is what exactly will the pain clinic offer me? Do you think it is worth my while going? I am getting pretty desperate as the continuous pain is starting to really get me down.
My daughter wants me to move to London to be near her so she can help me but my husband is not happy about it, we have lived in London and he hated it but I am now in a position where I could do with some personal assistance. Trying to deal with all the pain, lack of mobility and still thinking if I am doing the right thing by moving, is doing my head in. Sorry to ramble on and veer of the subject, any input will be more than welcome, Ann xx
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superannie
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Hi,sorry to hear of your plight.At my pain clinic meetings we discussed pain meds, usuing cognitive behaviour to cope with the pain ,and if they think it worth while (sorry didnt think much of mine) they may refer you to someone. Basically mine was a lot of talking,telling me stuff I already knew ,offering me meds i had tried,and that i wouldnt get acupuncture on nhs.
Yours may well be different and it is worth a visit . best wishes
Thanks, I think I will go just to see if there is anything that I can use to help me, I am starting to realise that it is very much up to myself how to handle this whole thing. It has just been such a quick move from being perfectly fit and able,now in this situation ,that I have been told, is only going to get worse. The mind boggles. I think it is because I have not really had one good pain free day in a long time. Oh well, we just have to get on with it. it is great that I know I can always come on here and have a good old moan! Thanks again for your reply, Have a good evening, Ann xx
Am I right in thinking you haven't been to the pain clinic before? Your first appt would probably be with the pain nurse. Highly qualified in all aspects of pain and sometimes less bisy than the consultant!
Sje will talk to you, check your drugs and how they help, or don't. Give heaps of advise on management, groups tou may like to attend etc.
David didn't enkoy the group meetings the few he did attend. Too many people trying to claim their pain was worse than anyone else's. He got bored, took his tens machine apart and dropped it all over the floor!
But like any groups some get a lot out of them.
As to moving. I don't need to tell you to think very hard about that. Weigh up pros and cons. If you have friends where you live now and get the support from the pain clinic - can you be sure you will get all that in London?
You don't give any indication of you age but could you get any support from social works> That always makes me laugh when I say that cos answer is usually NO!
Oh yes and try and take your husband along to the pain clinic with you. He will learn much and will be able to, hopefully, nag you into pacing yourself.
Thanks Pat, I am going to give moving a lot of thought. I am 57 and have not been to a pain clinic before. I have had some help from the social, they have delivered me some aids for in the home which have been a big help. I did try to claim DLA but was turned down. I am still capable of walking a certain distance, cooking a meal and seeing to my personal needs. Thing is they have no idea how much pain and effort it takes to do any of these. I think my husband is in denial about my condition. He just wants things to stay the same as they always have been. I am the organiser, go getter in the relationship. I will give him his due, he tries his best to help. Thanks for your advice and I shall no doubt be asking for the helping hand you have offered! Ann x
The pain clinics can be quite helpful. They might be able to suggest things you haven't thought of and give you some info on how to manage the pain. They do run pain management courses. I actually enjoyed going to mine, just to know you weren't the only one with chronic pain helps! They teach you about mindfulness and have a bit of physio along side too.
It's always best to take them up on anything they offer really. Something might just work for you!
Take care x
Have you seen a rheumatologist, had a referral for physio or occupational therapy. I cant fault the pain clinic, but i saw the consultant who was very informative, and made recommendations to GP. I tried acupuncture but it wasnt for me, but this was a suggestion from Rheumatologist herself.
Hi Ann, Firstly, there was a general warning on the national news this morning with respect to the taking of 'Diclofenac' being a contributory factor in patient heart attacks, a chat with your GP prudent perhaps!
With regard to the pain clinic - what have you too lose by going? Any benefit would surely be a welcome bonus. I hope you find some relief. regards, Talgarth
Hi superannie, Pain clinics are there to help with pain management, and that is what they do! Go along and give it a go, It is all very well for us who have experience of pain clinics, to try and tell you what to do. We all have different levels of pain, different doctors ( some better than others! ) but at the end of the day we are ALL DIFFERENT! So go along with an open mind and take the pain relief they offer, they are there for you, and in time, will get to know you and your pain much better. Listen to them rather than us - we all have our own agendas! oh, and pain!!
But don't think about moving yet. One thing at a time, sort the pain out first then see, worrying as to whether or not you should move will make the pain worse! There are very good carers out there who can help with the things you find difficult, but first of all, trust your pain clinic.
Let us know how you get on Ann, I have to have an epidural on Friday but whereas I wasn't concerned about it originally, reading all the negative comments on this blog, I am now very apprehensive!! Always make your own decisions and 'gut feeling' is quite reliable!
Your daughter is worried about you especially as she lives at distance -avert common feeling of helplessness and sometimes, of guilt, even if there is no real reason for it.
You would certainly get social care help following an assessment of need if that's what's indicated. Can I ask whether your spondylolisthesis is mild, moderate or severe? Would surgery help if severe? Not that Im an advocate but sometimes......! Is it in your neck or lumbar spine?
Hi I would rate my condition as severe as there is not a day where I am pain free. It is in my spine and the specialist said the operation is too risky. thanks for your concern and I will update as soon as I have been to pain clinic. Ann
Blimey, they do like to scare the pants off us don't they! I sometimes wonder if my condition worsened owing to the way my scans etc were interpreted by my doc. Chin up Annie, where there's life there's hope!
I am totally chirpy today, the gout pain is gone! Joy of joys. No seriously, my signature tune is " always look on the bright side of life" Always someone worse off than me. Ann xx
I am so sorry you are having to make such big adjustments in your life. Yes do go to the pain clinic. You have nothing to lose but knowledge. Knowledge is crucial for managing pain. Ask to be referred to a consultant, as you do not seem happy with your meds and are still in pain. They have 300 meds to choose from. Ibuprofen/Voltarol are more dangerous than we think: 3 in 1400 people will have a fatal stomach bleed (source: top Orthopaedic Physician).. It may take a while, but they will get a good combination for you over time. There are also procedures like injections of many different types that can help, and even pain controlling implants, ketamine drips etc. I find for me Pulsed Radio Frequency (drug free) gives good relief for nine months, especially my leg pain, which sounds a bit like yours. (I have chronic pain state, not arthritis). You do have to push for these usually, but no harm in asking. The pain management courses they offer I found very helpful and together with the meds, injections, exercise programme,acupuncture, massage and osteopathy (have to pay for those!) have greatly increased my quality of life since I was diagnosed As you can see quite a lot can be involved but worth it in the end as you will find what works best for you. I now have many pain free periods. I can't advise you about a move, other than stress is bad for pain. Maybe work out which route will be least stressful for you in the long term. Having lots of help at home makes a huge difference. If you go to London I personally found St Mary's clinic good, but there are others around the country: look for the big cities with teaching hospitals. Bath is apparently excellent. Good luck.
Thanks for advice. I am going to go to the clinic and will update later. Ann x
Hello
I had thought you had been to pain clinic, if you want to go now , well the treatments and advice that they will give will be dedicated to the problems you have with your health now and what advice they will also give you, will pertain to your condition also, it will be TENS, RELAXATION etc and the medications that will help your condition more with possible less contraindications
With regards to moving down from the Midlands back to London only you can really answer that, you will have made circles of friends that you will miss, and the life that you have now
All I can suggest is go by your gut feeling, I moved from an area where every thing was there to an area with no family backup, although basically I was on my own before. and find my new next doors are much more easy to get on with.
You are lucky to have family as I have lost all of mine, also I am now in my sixties,r life married with one dog, personally I would not move down south,and prefer countryside living it is all up to you and what will suit what is going on in your life.
Thanks Bob, I am going to see what the pain clinic has to offer. I was chatting to a fellow cps who works on our mobile library and she says it has helped her a lot with pain management and she has signed up for a monthly support group. It was really nice to meet someone who knew exactly what I was talking about and what I am going through. We connected straight away.
As for the move, I am giving it a lot of thought. It is a big decision and will not be undertaken lightly.
I am pleased to hear you have settled in well where you are.
my partner had suffered with extreme gout for many years and the dr had him on various pain killers including diclophenac.
He had been talking to someone who had also been struck down with gout who had been prescribed with Allopurinol 300mg l daily and this had worked wonders and thankfully he has had no more probs.
Needless to say when we had to get the dr. on a home visit because it was so severe and effecting wrist, knee and ankle he mentioned this to him and got it prescribed at the same mg.
Well that worked like magic, he has to take it daily even though he has not had a bout since starting them.
lt is possible that with all your other meds it would not be suitable for you but it is definitely worth asking.
I read that Allopurinol is much safer than the diclofenac. I am going to keep taking these till this flare up is over then shall see the GP and get the script changed.
Hi Superannie, I forgot to say above that Voltarol is diclofenac. Don't want to freak you out, but better to know. I get stomach ulcers just from the gel. Seems you have some pain relief for now, which is good, and as others have said, they will review your meds at the clinic. Meanwhile GP could, if appropriate, give omeprazole or lansoprazole to protect your stomach. Good luck.
Thanks, I have noticed since I started these diclofenac on Friday I have been so bloated. I look like a pregnant fairy. Stomach churning like a washing machine! Am hoping to stop them next week. Ann xx
If you take any NSAID and diclofenac is a bad one, there are better, you need a med for your stomach definitely . I used it on and off for quite a few years but find Naproxen much more effective and there are newer types that have fewer side effects. As to moving, only you know if it would be good. Dont rush the decision.
Nerve pain is a pain .....I take Gabapentin and amitriptyline for it.. good for sleep and very useful
Hi I have tried the amtryptiline and it is the lowest dose and still takes me a day to come right after using it. I do get a good nights sleep so use it every two weeks. I have yet to try the other. Have decided to try and see GP in the morning. Something is going on, have a feeling the co codamol are not as effective. Pain is very bad and it is all day. I will update tomorrow. Thanks for your reply. Ann xx
Amitriptyline needs to be taken regularly, take it a few hours before bed it lessens the hangover effect the next day, if you use it with gabapentin, I started on a low dose you should find it helps a lot with sleep, but also affects pain levels the next day. It sounds as if you need more pain relief than you are using. Only an opinion, but if you have sleep you are more able to cope. Took me a while to understand that its a balance between side effects, which can be managed to a point. or no sleep , pain 24/7. I no longer feel exhausted all the time and my pain level has dropped. Co codamol helps in a different way, I use a low dose with gabapentin during the day which I find alleviates some pain, but it took me over a year to tolerate it. Everyone has to make their own choices.
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