Pain Clinics

[pinkbutterfly1000]

Well I must have been kidding myself if I thought I was gonna get back in the pain clinic easely . The phone call today told me that the man in charge of running the Nottingham city hospital one would have to organise and assemble the apropteate specialist people together because they could evan offer me an apointement . Then they told me I could have a date of the 8th of September to talk to a nurse on the phone and she would express my concerns over to this gentleman . Frankly ime pretty discusted at this and frankly a person could have a break down with severe pain in the mean time . Whats your experience with pain clinics ????

[Hidden]

I ask to go to one but can't get anyone to refer me - they each say, let's see how ... goes and then...

[pinkbutterfly1000 in reply to Hidden]

Hi Secondhand rose

And then .....NOTHING ........am I right !!!

[Gyrosa64]

first of all told by hospital they send me to pain clinic then there was a mix up between gps and hospital as to referral only found out when went to gps 3 months later there had been no referral told by gp to phone hospital which i did to be told was down to gp to refer me so 3 month delay and and top of that theres a 6/9 month wait absoloutley brilliant

[pinkbutterfly1000 in reply to Gyrosa64]

Hi Gyrosa

That's just typical .....cricky 6-9 months .

I was suposadly given an open apointement last year if I needed to use it ..........its a joke ..........ive rang that hospital three times this week and yesterday I sent a letter to Mr Dale who runs the pain clinic at my hospital , but you know somhow ive got a feeling its all gonna take forever .

Hope you get something sorted ,I really do

Wishing you all the very best

Hugs

Tina

[earthwitch]

Like most other clinics in our area, the target wait time is 12 weeks here, though the pain doctor (its just one, as its only a small hospital) here does try to see people the first time within 4-6 weeks.

Have you had any help from your GP with pain management?

[GRUMPYA]

Trouble is a good gp or practise or community nurse normally knows as muchabout what they offer anyway. For some people spinal injections help for a bit but mostly it's anti depressants that help nerve pain for a few and recommending that you take up a hobby! I think pain clinics are a waste of time, you can make the most of your life without doctors making you feel like it's all in your head or all your own fault. Think a lot of the problem is that most pain doctors are anaesthetists who aren't used to having speaking awake patients.

[Hidden in reply to GRUMPYA]

Grumpya' my friend, I had to laugh when I read your post about sleeping patients, ha ha, But you do have a point, or point's, and that's good advice, but most real pain medication must be initially prescribed by a specialist due to controls around drug's.

My original pain clinic was good up to a point, and he did tell me that most meds around nerve pressure do work for 70% of the pain, and the other 30% (most of the time) you have to learn to live with, but there are days when it comes to the front, and it feels like 30% work 70% you have to bear.

But the pain threshold can vary with different people ,but I'm suspicious around using too many pills that target just nerves, because switching off the signals from the nervous system when we do not fully know what other signals( apart from pain) that are being sent by the nervous system to the brain and allowing it to manufacture other chemicals for whatever reason and that are needed.

sorry about that, Grumpya.

[GRUMPYA in reply to Hidden]

I have come to the conclusion that learning to live with the pain is the only way to deal with nerve pain. I am on drugs that mean 70% of the time when at rest I can deal with it, so I find tactics that work for the 30% and accept if i am doing stuff it will hurt and that some stuff isn't worth doing cos the pain it produces is too bad. I think some people expect too much, being pain free isn't always possible but distracting yourself or learning to deal with it can be good enough. I use a wheel chair and I have told my employer that unlike a healthy person I won't go sick because I am in pain because pain is my normal.

Admittedly I do go to bed as soon as I get home some nights and sometimes spend my day off in bed but otherwise I have just accepted that this is as good as it gets and that this is my new normal and that's my life now. I paint my smile on before I go out and smile at every customer where I work and try to be cheerful and sympathetic, and I quite like life now, it's just 10% of the time when I wish I didn't survive what happened to me but those times pass.

[earthwitch in reply to GRUMPYA]

I think it depends a whole lot on whether you get referred to a pain management clinic (largely psychological methods) or to a pain medicine specialist (who has a whole lot of medicines knowledge and may be able to do things like CT guided injections, nerve blocks, etc). I'm lucky in that we have a pain medicine specialist, though he is only a GP with special interest, so can't do the full range of techniques.

[GRUMPYA in reply to earthwitch]

I think there is a difference between the 2 and think both my experiences and my attitude are caused by the fact that my pain that debilitated me was caused by a doctor. You don't get good treatment diagnosis or treatment if a doctor caused your problems. I wish everyone on here luck but although I have had nerve blocks and injections and had drugs tweaked about personally I found pain clinics unhelpful and as usual doctors far too ready to blame the patient. I cope best with a minimum of contact with doctors and have learnt to live with the pain they can't treat. Sometimes the expectation of being pain free is destructive in itself. But that's me.

[earthwitch]

Have you thought about contacting PALS? If you were promised easy access back to clinic and you aren't getting it, I'm sure they could look into that for you.

[GRUMPYA in reply to earthwitch]

Good advice

[Heorte]

Yep, similar here. Chronic pain just seems to be a long awaited appointment and drug juggling when seen - weeks / months to follow up. Sad irony is that I used to be an SRN and knew much more than person opposite me (although I didn't tell them that)

It is easy to feel that GPs, people etc are condescending and get fed up with patients in chronic pain. The truth is that they do not have experience of it and can only really understand the acute pain from trauma, surgery or infection, and that goes away predictably fast.

Take your own control and try to find what suits you best, in all aspects of living with pain. Firmly insist when you need to speak to someone or change drugs etc, I've found a better response that way than when I used to break down in tears, and if you're bad that way, write it all down before you go to the appointment. Good luck with it all.

[Hidden in reply to Heorte]

Or take full control and go the alternative route. Many alternative therapists are very experienced with chronic pain, understand its pathways, and how to sort it. In my experience I've seen 13 different ones over the years, they are more knowledgeable about pain than gps. Different ones have worked at different stages. All have worked on getting my body to relax and I have an exercise to do it daily. Some have worked on specific areas, others have worked on the whole body. Some have included my mental heath and others have mixed up therapies for a greater result.

Yes it costs money, but you get something that works, you feel better in yourself for that one hour session, and you can ask how to carry on at home yourself. I do lots at home now - 3 x 1 hour sessions A day rotating through the week. If I miss any, my body soon tells me. And if I know I'm going to be more active than usual, I increase the exercises for a few days before to prepare my body, and increase after, slowly getting back to normal amount.

Taking charge of your own health is time consuming, hard work and may seem a waste of time in the beginning as you see little improvement. But slowly you will notice you can walk further, do more housework, shop for longer, thevpain is noticably less but you can't pinpoint a date it happened on.

Afterall, if you are not prepared to look after yourself and do the best for yourself and your health problem, who else will?

[vmatt3]

It does take a while to get to see the specialist but if you can bear with it, it is well worth it.

[suzitaz]

My pain clinic have been fantadtic over tge last three years offering a variety of symptom relieving treatments. I cant praise them enough.

[pinkbutterfly1000]

Yesterday I got in touch with the maxillio facial surgeon that got me to the pain clinic in the first place . He told me to send a letter to the guy that's in charge now of the one at the hospital wear I went last time . This is the gentleman that contacted me by letter a year ago after my last apointement and on the bottom it said " we would like to offer this lady an open apointement " We didant persue things a year ago because all seemed well and I had not long started Pregabalin and I was happy ,but since then something has taken a turn for the worse with the nerves in the lower jaw and its effecting all my bottom teeth now every day and evan with this drug my lower face feels terrible.

My own doc wouldant persue the pain clinic on my behalf ,saying ,they will only give you what I can ,take another 200mg of Pregabalin daily . To this isant the answer because im now upto 15 stone with this drugs a weight gain of 3 stone . That cant be healthy for anybody ,its just putting you in the way of other health problems cropping up .

[Gyrosa64 in reply to pinkbutterfly1000]

yeah know that feeling my gp wouldnt pursue pain clinic either very helpful even though I have been on morphine for over a year and while I am on that can not go back to work gp wont take me off morphine or because she says am in chronic pain and the pain clinic will deal with that I understand that but cant I at least try something else so that I can maybe get back to work as theres a long wait for pain clinic thats if I still have a job do they not understand its bad enough being in pain without other worries and having to try and chase up pain clinic yourself and none of this is healthy for anybody either including all the long waiting times I have had to endure with NHS for different treatments with regard to pain I am in and none of this is healthy I completley agree with what you say and wish you the very best of luck to get something sorted

[mitziblue]

Oh my goodness, this is terrible. I live in the states, and after going to the pain clinic I'm lucky enough that my gp gives me my prescription now for my pain medicines. That's horrible to wait that long and enough to put anyone into withdrawal if they suddenly don't have their medicine. I can only imagine the pain plus the withdrawal would cause. Been there and it's as close to hell as you want to come to. Praying you get some relief soon sweetheart!!!! xxxxx Mitzi

[dora21]

I was told I had been referred to my hospitals pain clinic only to hear nothing, that was in August last year, I went to A&E because my pain was so bad & I begged to have my leg cut off because I was fed up of waiting & in so much pain.

While in A&E all they said that could be done for me was for them to write a letter to try & speed things up with the pain clinic, they also told me to go to the pain clinic & scream & shout to be put on their cancellation list which is what myself & my partner did the very next day.

After a lot of fuss the lady at the reception agreed & found my details at the bottom of a massive pile! She put it at the top & said I would hear something soon, Within a few weeks to a month tops I got the call I so desperately needed & I had my appointment made for me which was about just weeks away!

initially they had made an appointment for me which was about 3 months away. Thank god we jumped up & down. Go try & get yourself on the cancellation list, fingers crossed you will get an appointment. No one should have to scream or shout about their pain issues, but it seems to be that there is a national shortage when it comes to pain clinics in the uk.

[pinkbutterfly1000 in reply to dora21]

Hi Dora

Thanks for your reply

Goes to show that peoples files and information can just end up at the bottom of the pile and all this does is just add weeks and months to peoples time for apointements I could easely go back to my gp and im sure she would listen ,but at the and of the day she is a general practitioner that has a wide knowhow of lots of diferant medical things ........but that's not being a specialist in pain control ,and I know she would try any medication if it would help . She knows that Pregabalin is an expensive drug and she has no problems prescribing it for me ,but I feel it needs more specialist know how in dealing with my problem .

Kind Regards

Tina

[teadrinker]

Butterfly, I can well believe it as I have been stuck in the same system a few times in the past. On several occasions I was told by the pain consultant I needed to see him again in 2 weeks, only to be informed by the reception staff that there were no appointments at all, indefinitely.

Another time I was told I would be getting a nerve block at the treatment centre and I assumed that this would be done within a couple of months. I phoned up in the end and was told they could offer me a cancellation which meant I ended up waiting 8 months. I was told I was lucky because the waiting time for a nerve block was usually 12 months.

Things have been much better at City Hospital than at QMC. The longest I've had to wait for injections is a month following a consultation.

I have found the best way is to phone the consultant's secretary directly - ring the hospital switchboard and ask to be put through. It won't guarantee you an appointment but it sometimes gets things moving. If that doesn't get you anywhere, you need to contact PALS - again, phone the hospital switchboard. They are the complaints' department. I've not had to resort to this yet, but I will in future if necessary.

And I am quite assertive about getting the receptionist to make a follow up appointment before I leave the clinic, if that's what the doctor has said I need. Sometimes they genuinely can't do this but I will try to avoid the "oh we'll send it in the post" situation.

I think the long waits for treatment, and accessing the service in the first place are unacceptable. But the clinics are often bound by the lack of resources they have to work with. My recent experiences have been mostly very good, and I can't believe how lucky I am.

[pinkbutterfly1000]

Hi Teadrinker

Im pleased for you ,I guess you must be one of the lucky few that got delt a good hand eventually. When you think about ,their are people out their that are probably in despair and on the verge of a breakdown with their problems . For these people months are too long

Best Regards

Tina

[Piggysqueak]

Hello there pink butterfly

I have only seen the main post and not read any other yet so I'm not up to date with what happening to you ?

I am currently being treated by Nottingham pain clinic although I did ask my GP to see if I could go back to QMC as that's where I have always been seen . No joy as yet !

I was discharged from derby pain clinic as I was nt well enough and in to much pain to attend 2 or was it 3 appointment I tried my best to inform them early if another procedure was happening but no not good enough . They were so utterly useless with me and it made it worse as I had previously worked as a senior sister with the pain dr consultant that saw me and I was shocked at how badly he treated me. My mum had seen same consultant and I said mum he is brilliant mum was in tears after seeing him yet I truly believed he was the best that was until I was a patient !

That's a new ball game. I must admit my notts pain consultant is fantastic her name is DR Fernandez she does as much as she can and the phone call follow up suit me as save me travelling however when it DR Fernandez on the end of the phone I am waiting for phone call follow up with a nurse not alway very helpful as always it depends what you need from them. I would love to hear more of your story if you don't mind ? Oh yes on one occasion I travel to notts city was v car sick in agony and sweating with pain but desperate for help and explained to nurse could I wait outside in the car or a room where I could lay down until my opa as I was in terrible usual pain . I was sent home as they said I could have ? Very contagious virus despite me and hubbie begging and pleading that this was normal for me .

Look forward to hearing about you case if you want to hope I have helped to basically say there is good and bad every where take care Squeak xx

[Piggysqueak]

Only me again

just read some of you past posts. You have had a terrible time and the pain just sounds awful . I'm on pregabalin as well and it's a catch 22 I was on 300mg twice a day and had all your symptoms and few more but it helped my pain but I had no life so with DR FERNANDEZ PAIN CONSULTANT help I manage to reduce it so pain was bearable with pregabalin( and main more tablets including morphine slow and quick relief ) and side effects were tolerable .only side effect I still suffer from is horrendous weight gain and need eat constantly same foods for months ie choc weetabix . I'm now on 150mg in morning and 225mg at night it was 150mg at night I did nt notice any problems reducing however ever one is different . I was told to stop 50mg amltriptline and it was horrendous I reduced until I had to cut tiny bits of tablet it maybe is one of the hardest things I have ever done . Back to pregabalin I must have been on it at least 7 years I am very immobile and in constant pain unless I bed rest . My weight went up by 7 stone I could do nothing but watch it go on but I started to fight back in November after a good friends help and I am not wasting another maybe ok day I am fighting back lost 3 stone 5 pounds so far .when I'm bit ok I get a friend to help me get out and I want to live again I know I have hard road ahead of me but I try to say yes instead of no and I still spend a lot of time in bed but I know my next good day I will get out . Enough about me I do bang on sorry but think someone else suggested it PALS should help and keep pressure on them ring every week to speak to consultant sec I think sometimes more you tell them the more they understand some do the other well .....

Take care Pink butterfly constant pain is terrible thing. Keep strong and determind you must get help and answers I do hope

Best wishes Squeak xx

[pinkbutterfly1000]

Hi Piggysquek

Thanks for your replys

I got refered to the pain clinic at the city hospital ,after seeing Mr Rowson the Max Facial Surgeon privately at the Park Hospital ,Nottingham. He was part of the team assembled their and after a chat because the Pregabalin seemed to be controlling my cituation I was happy to just keep taking that. Acouple of weeks later I got a letter saying I had an open appointement . Some months later the nerve problem in the lower jaw flared up again ,and after seeing my doctor who only suggested I take a bigger dose of Pregabalin ,I wasant too impressed to be honest and expressed my concern about the 3 stone weight gain and also mentioned that maby I should go and see the people at the pain clinic again . At this she just said that they would only probably give you what im offering now ,more drugs.

I decided to ring pain management services and after speaking with a lady their explained about the open appointement . She asked for my nhs number and checked the previous detains and explaned that it was Dr Dale running that clinic and as it happens he was the guy who sent me that letter. After a week the lady did eventually ring me back offering me a phone appointement with a nurse in the middle of September and this person would pass on my concerns to Dr Dale. I wasant too impressed with this and after getting intouch with the Max Facial Surgeon he suggested I send a letter to Mr Dale ,wich I did last week . Judging by what others have put on here appointements seem difficult to get and to be honest ive very little faith in the system here with the NHS.

One things for sure im gonna get off this Pregabalin and ill do this by gradually lowering the dose . All this extra weight just puts a person in the way of a lot of other health problems occurring .

Kind Regards

Tina

[loose-screw]

What a joke. I was complaining about severe muscle spasms and nerve pain which are still in evidence, since a plif for grade3isthmic spondy. No one had told me the pains return with a vengeance 2-3 months after surgery. As I am on a lot of meds but need to go to work as esa just does direct debits ect then I live on my wits! My worse meds are amitripylline and gabapentin ( i hve pain, I as hoping for a nerve block and to cut them out. I had 1 appointment, told nerve block impossible as epidural only worked on my left side after surgery. Quack reckoned my nerves would be far to damaged for that. No imaging or anything except a letter to increase gabapentin to nearly double and to keep amitriptylline. I have increased gaba but cannot handle the amy on top most days. I would be a danger to myself. I was then discharged. TBH I cannot be assed anymore, I am pretty much incapable of attending an appointment in anycase!

[Hidden]

Well unfortunately,they are rubbish! Apart from strongly advising you to take anti-depressants or go back to your country...there is nothing available with the NHS.So,when you are desperate and depressed,they send you to therapy,groups of people suffering from chronic pain talking to a therapist about how to accept pain.

GRRRRRRR

[Kelly134]

Hi how did you find the Bmi park consultant? Would you recommend him?