Pain clinic

[Rachel-Grace]

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.

[billi]

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 word...lol). 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..

Hugs

Billi

[Rachel-Grace in reply to billi]

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

Rachel

[billi in reply to Rachel-Grace]

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.

Billi

[MrsBeau in reply to Rachel-Grace]

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?

Beau.

[Rachel-Grace in reply to MrsBeau]

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.

[suzannenmike]

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

[Rachel-Grace in reply to suzannenmike]

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

Rachel

[picklepops]

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

[Rachel-Grace in reply to picklepops]

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.

Rachel

[Rachel-Grace]

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

Rachel

[TaraBella]

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.