Pain clinic: I think this is the first time I've... - Behçet's UK

Behçet's UK
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Pain clinic

I think this is the first time I've written although I follow the posts daily. I have Behcets and hereditary sensory neuropathy (Charcot Marie Tooth disease). It is on the same spectrum as muscular dystrophy. The two things cause multiple problems and I am never free of pain or ulcers and skin problems. I am on número use pain killers as well as immune suppressants etc. the reason I'm writing is that I was referred to the pain clinic I waited months for an appointment but eventually my turn came. The appointment was for 45 minutes but after 10 minutes the dr said my problems were too complex and she couldn't do anything for me but a nerve block might help a little so she would book me in. Yesterday was my day to go for the nerve block, I am self employed so had to close the business for the afternoon, I arranged for lifts as I wouldn't be able to drive and sorted for someone to be with me for 24hrs. Was admitted any allergies yes lydercaine, ah that might be difficult. She came back 10 minutes later to say they would not do the procedure as they would have to get a different local anastetic and as I had so much pain one less wouldn't make a lot of difference. I am annoyed but also feeling a bit low as one less pain even for a few weeks would have made a huge difference, my future is more drugs and I was trying to avoid that even the physio will no longer touch me as she is worried she will do more harm. Sorry for rant just cheesed off and future doesn't look promising.

12 Replies

Hi and I am so sorry for your pain and recent insensitivity, intolerance and misunderstanding you have experienced. Sadly this is countrywide as it took me about 4 years of chronic intolerable almost suicidal pain before I found a doctor who,listened and took me seriously. I now recieve trigger point and steroid injections which really do make a difference to my life. Obviously ther are adverse effects in all scenarios but until you have suffered nonstop intolerable pain affecting every part of your life and lack of sleep the balance is worthwhile. Over just 3 years I have had 3 (can't remember the right Sets of injections each time between 5 and 15 in areas needed. It doesn't make me pain or medication free but definitely I am in less pain amd have more mobility also I have now reduced my meds b 2 thirds. Obviously this is only a like a plaster but hopefully a cure and better treatment for us all is just around the corner. For many years I was a martyr to my illness, i trusted doctors completely, I didn't question and I certainly didn't fight my corner but now I know we have to help ourselves and do our own research and sometimes even dare to demand better. I am so angry that the doctor did not ask you all the right questions at your initial department eg allergies. This was their mistake and you shouldn't be the one to suffer as the doctors complete attitude is unprofessional and blasé .

A bit of advice....always take notes of questions you should ask, how your illness/pain affects your life, take a friend along to help you and always carry something which in an emergency or at appointments tells others what you suffer from, medicines taken and any allergies or no no's.

Hope this helpful and good luck. Please let me know how you get on..



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Thank you Billi I have calmed down now but was both angry and disappointed. I try and live a full and active life and keep mysel as fit as possible but this only seems to make drs less helpful as they don't see past the exterior to the fact that I only get 2hrs sleep due to pain and I have to grit my teeth with every step, and rest at every opportunity which means there is no social life., but I do love my wool shop and the lovely people who come and share a cuppa with me so it's not all bad.

Take care


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You are welcome and glad you have got it out of your system!!!!

Over the years I have noticed it seems to be those who shout loudest get noticed. I tend to not show my feelings or pain as I don't want to be a nuisance to my family, friends or even the health system.

I can picture you now in your wool shop must be therapeutic and socially very good for you.

Anyways, take care and let me know how things pan out.


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Hi Rachel,

Uncontrolled pain put me in a scary place too.

I second Billi's advice: I suspect many of us have been driven to take a very proactive approach to our own care because of experience like this.

I just wanted to add to Billi's comment about carrying info for emergencies: I keep mine in my phone. ( Actually, could do with a discussion about maximising usefulness of a smart phone for Behcets management, if anyone is similarly interested?)

On a happier note, wool shop? Where are you based?


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Hi Beau

Yes the pain at times has put me in a place a never want to go again but sometimes once you get that low the only way to go is up.

my wool shop is in Northampton and it is great, I get very tired but being surrounded by all the colours and textures just makes everything ok. and the customers are lovely, I have made some good friends and also seen that there are people a lot worse off than me.

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Good Lord, Rachel-Grace. No wonder you are cheesed off!

Your multiple problems will be difficult to deal with, and at least the Pain Clinic were being cautious about giving you a drug which would have been inappropriate.

I am in great admiration of you, having your own business is a huge burden in itself. Perhaps you could cut your hours and get a part time person, if you could afford to? A wool shop, you say! I am a knitter and would love to be a customer. Where are you?

Everyone else, especially Billi, has given you good advice, so I shall not add anything to their comments.

We all have difficulty to some extent with pain, not sleeping because of it, and generally feeling peed off about this blooming disease. It is good to have a vent, and where better than this site.

Wishing you all the very best, hoping something will turn up in the pharmacist's arsenal.

Suzanne x

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Hi Suzanne

I'm feeling more my usual self now I have vented a bit. The business was a huge decision but I was finding I was becoming more and more isolated and wasn't good for me. I do get very tired and at times feel I can't continue with another day but then a customer comes in and has a cuppa with me or I look around and see all the wonderful colours and think yes you can do this. I think the pain at night is the worse to cope with as it feels so lonely during the day there seems to be more I can do to help myself. Which is what I want to do I would prefer to avoid more drugs but it isn't going to happen.

Behcets like many disease is a lonely one because so few people know about it. I was lucky that I did the helpline for a while because I got to interact with so many people and hear their stories, but the Behcets has affected my hearing and so I had to give it up.

Thank you for your reply


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I rotally understand how you feel and the frustration of being at the mercy of docs treatment. I have experienced severe pain long term and at one time it was so bad I could not control my bladder was peeing my pants and at the same time could not breathe or talk. It turned me into an animal really. I ended up running around gasping for breath almost screaming and trying to bash my arms against a sink trying to get the arms away from my body they were so painful. At the same time as neuropathy in arms and legs I get pancreatitis too and many othef pains making it complex.

I also experienced an almost universal response from medical staff, that my situation was so complicated there was no point administering any pain relief that did not wholly rid me of pain. However we know from many years experience, that there are tolerable levels of pain but if more pain is piled on top it can tip it over the threshold and make it unmanageable and cause it to stop us from functioning altogether.

I was eventually referred to a really good pain clinic at Barts.They let me borrow a report to explain modern pain management. Those who researched the effects and control of pain in patients found some interesting facts that helped to give some power back to patients.

In the old fashioned way , medical staff were completely in control of pain meds and patients had to beg to get treated as staff are conditioned to see us all as potential addicts, especially if opiates are involved. My pain doctor asked me what my worst fear was if I was allowed to take as much pain relief as I needed. This is what I feared:

1. I could become addicted

2. I would be so doped I might not function

3. I would need to up and up the amounts over time

4. Even on pain meds, they would not rid of pain and I cannot function with pain.

The doctor said if the worst happens, and I became addicted, stopping the meds if I needed to in the future and suffering withdrawal symptoms would be nowhere near as bad as as symptoms I have now. And my quality of life would be back. My goal was just to be able to read a book and concentrate, watch television, and occasionally go out with dogs and knit/crochet to feel useful and be able to. interact with people with pain in the background. Our carers often get a raw deal, they have to hear us constantly fixated on symptoms if not under our control. It breaks some relationships. If you think we worry about how symptoms, imagine how somebody who cares feels about it . Even on our good days if we can forget about the pain, our loved ones cannot relax in case it comes back and the worry is constantly getting in the way.

I read the report he gave me and it changed my outlook. Modern studies in pain management showed that patients who were in complete control of their meds took lower amounts than those who had to beg for them on a specific schedule from medical staff who controlled the amounts. People who have to ask others for the pain relief have a fear of refusal. They will often ask for meds they dont need at that time, in case the pain returns over the next 4 hrs or so and they fear getting refused in the future. Those who self administered were advised not to wait or be stoical, take as and when needed up to a set max that's safe. They found the patients in control took far less meds than those requested by patients not in control.

And in general, the anticipation of pain seems to create more awareness of it, and fear does increase the levels experienced. Taking away the fear and imagined future of pain without being allowedwed painkillers drastically reduces awareness of present pain.

Other factors involved were things like realistic pacing as opposed to rushing to do everything and being stoical about it, e.g. medical staff advising us over the years to get over it and ignore it means we are sometimes made to feel weak for suffering pain, so want to push it out of our heads but can't. Actually accepting pain, taking the correct level to take the edge off or remove the pain, actually lowers pain levels experienced in the first place.

We are not children and many of us are not self dstructive despite having difficult lives.

We dont all need nannying and withdrawal of help that could change our lives. I think taking the edge off one pain can make a huge difference to perception of remaining pains.

As a result of a change of attitude, my pain levels can still he high but I have tools to deal with it. When I was first on pain meds, I was taking 50mcg Fentanyl, Gabapentin, and codeine or ibuprofen and other opiate stuff on top. Since I have been allowed to choose, since 2003, I now have a 25mcg patch, rarely take any other opiates and have LIyrica/pregabelin which I feel is more sophisticated and totally superior to Gabapentin but more expensive so docs not keen to prescribe.

Having the option to increase as and when.needed means my maintenance dose is lower, and cheaper too. Many patients are scared to reduce a dose in case their GP refuses to put it back up again and they are likely to hoard meds, or stay on higher dkses kust in case they need it in the fiture.

I also got prescribed tincture of Cannabis Sativa, and Cannabis chocolate which iseg, but really helps better than any other pain med I tried and means I do not have to take extra opiates on top of my normal meds. This can make me feel a bit doped, so for emergencies only. I dont advise this route, despite it working,my medical herbalist is now in prison and lost his whole herbal clinic and wholefoods shop and cafe. He had been hoping it would be fully legalisd by now for medical purposes but drugs companies control a strict licence and only certain clinics can administehis. But, if you have a more common illness like MS the sativa drugs companies wantyou on their trial. I was refused for Behcets because it is too rare and so results of studying me not useful enough.

My pain can get really bad and at those times,I retire, accept I need some time out, and deal with it with no anxiety or shame. I also pace myself and make sure I do not get pressurised into taking on too much. That can be difficult with families and friends. I have to sayno to a dog walk followed by weekly shopping, and make it clear I cannot do both on the same day.

If were you, I would ask to see a medic on the pain management team as opposed to surgical/anaesthetics one. You can also talk to a pain psychologist and get your needs and goals on paper. They have more of a holistic approach. Rekemner as well, you might see different docs on the same team and bave a totally different experience and opinion. A panel n when we have to wait mo ths, I waited abiut 18mths once and then my normal pain doc was on hols, and his locum could barely communicate.

It took me years to explain to a normal doc that not being able to use hands was a big deal being a professional sign language interpreter and the not being able to talk fluently to a Deaf friend or community member. And then my secondary career was as a knitwear designer and pattern author but docs used to joke about the knitting as if it was a trivial hobby. It is normal for medical people to see your body mechanically but not take on board the reasons why you need to function.

However, despite getting good pain advices and prescriptions to suit, occasionally my GP will insist it is time to.stop themeds, kust because it looks like I might becoping with pain again. So just as you strike a happy medium of pain relief to function, a doc might want to all just because it appears to be working.too well! This always throws me back to the old days and makes me quite tearful and powerless again to think my pain meds wlill be stopped just because they are taking away pain and so looks like I dont need them.

Sorry that my hands dont work, sometimes my voice programmes throws out rubbish and might be lots of typos above!

I have been "off work" for a few years now from my knitting pattern authoring and so completely undersfand the worry about interfering with work. I did not have the luxury of sick pay, I just bad to stop and really miss it but bave to keep a goal pf gpng even if that is fantasy. I have hand neuropathy, arm scarring shortened limbs and fixed positions as well as having broken fingers, swollen joints and severed thumb. in a fallthathqd tobestitched back on, and so a loss offu ction and.numbness making knitting, typing and personal care difficult


Thank you Erssie for your in depth reply and the effort it must have taken to write it. I agree with the need for control my GP is very good and she says juggle the meds to suit each day as long as you don't exceed x amount. So I try to keep as many as possible for night. Although I don't want to be dopey in the morning. The next drug to try is gaberpentin it seems to be the new wonder drug although I think that is because it is cheap.

Do you still do knitting patterns? I would be interested in some new things for the shop. I had to stop knitting and crochet for a long time due to numbness but I have gradually managed to find ways of doing it although I am slow and not as neat as I was.

Take care of yoursel



Hi all

I was referred to the Chronic Pain Clinic 5 years ago. It took 9 months to get an appointment to see the consultant. I was offered nerve block injections of one area at a time. I found the nerve block injections at great help with taking the edge off. I have now been informed by her that it is not good for me to keep having these injections.

So in 5 years I have had 4 nerve block injections, with a huge distance in between. My next appointment with her is on 7th April so will be interesting what she is going to offer me in the way of pain relief! I have acupuncture once a month at the physio department. So with a slipped disc, arthritis in spine and joints and muscle pain all over my body there are times when I just feel so drained by it all. As I want to be independent and drive my car, I can't dose myself up with heavy pain meds. I do however dose up at night but still wake up during the night in pain. I don't know what the answer is or the outcome is but I do hope for some help. With that I leave you humming "always look on the bright side of life"

Pickle x


Hi Pickle

I suppose like all drugs the nerve blocks have side effects but I'm glad you got some relief. I think part of the problem not is lack of funding and so the consultants have to make some hard decisions for the common good which we all do to a lesser extent. Like you I don't want to take heavy duty meds due to work and driving but some nights it would be nice to have something.

There is only two sides of life to look on and I prefer the bright one although sometimes, luckily not often, the dark side takes over but just for a short time.



Pain has been very debilitating for me...back pain, peripheral neuropathy, and headaches for 3 years. I disliked taking vicodin around the clock. Gabapentin ans Lyrica made me very dizzy/confused-feeling. An epidural steroid injection in my lower back gave me a CSF leak...which led to more headches and bigger problems. Trigger point injections, for me, barely changed the back pain. At the present time, it seems the pain is best controlled with an antidepressant (many of which are well known to treat neuropathic pain), and low dose naltrexone. Now I take vicodin only on my worst days. It took nearly 2 years to find this combo of meds that has given real relief. I wish you well and hope you find the right combo of meds for you soon.


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