Living with Chronic Pain: Hi, I was hoping... - Pain Concern

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Living with Chronic Pain

Shakou profile image


I was hoping some else will have experience with what I'm going through, will be willing to share how they managed, improved their health, work, relationships with family & friends.

I have chronic pain through out my body, my mouth taste like there is metal in it so I can't taste anything properly, I also get severe fatigue some days too it does vary in how that happens. I have been to three hospitals so far they had no clue what to do, waiting to get in a Pain Management course, waiting to see a neurologist. I have tried all kinda of drugs, but nothing works at the moment they do make me worse the side effects I mean they just blow my mind it is nasty. I feel really low sometimes too, I'm action person I like Cycling, XC Riding, Swimming, Shooting Hoops, Motorbikes, Travelling the list goes on I'm so angry right now that I can't do anything I hate it that I can't & I really hate medication because the way it makes me feel. I'm not taking anything right now, getting the other stuff out my system, my doctor wants try me on duloxetine now does anyone have any feedback on this drug?

Has anyone else gone through this, or going through it? I'd love to see how other people have got through this shit and improved themselves. I'm all about improving myself I have a wicked job that I love doing, I got support from family & friends I just want to be normal again so I can do all things I love doing (or close to it as I can get) but they right now don't understand what I'm going through, what I'm feeling the effect it has on me so I'm open to help, ideas, suggestions.

Thank you for taking the time to read my post.

55 Replies

Could it be Chronic Fatigue? I got so bad that I could hardly walk, it was terrible. The only clue was that I had blood in my urine so I had many tests and eventually ended up seeing a urologist. He was a clever chap who sat and asked me all about my lifestyle etc. I was looking after my elderly, very sick Mum 24/7 and was completely exhausted with the stress of it all. The urologist diagnosed Chronic Fatigue. He did lots of tests to rule out anything serious but in the end I was told to home and just rest my body which of course I couldn't as I still had my Mum to look after. It took me over a year to begin to get my life back and I still get exhausted even now. That was 2008. I know the frustration you are feeling but I have just had to come to terms with the fact the I cannot do what I once did and enjoy the good days. I do hope you get some help soon and discover what's causing your fatigue. Are you under a lot of stress? Sometimes your body just say "NO" and packs up when it's had enough. Wishing you well soon.

Shakou profile image
Shakou in reply to pump321

Hey thanks, I would say it is Pain. I get neuropathic pain so my body feels like it is on fire, pins & needles, really bad muscle soreness, shooting pains kinda like an electric shock and the metal taste in my mouth. As an example when I cook or make hot chocolate I just dump more spices or hot chocolate powder in so I can taste it, you known so it taste good, then other people try it are are like wow dude so it appears I use a lot more than they would! I think the fatigue is just a by product or part if it, how lucky am I? I don't think I have depression as a separate thing, I'm just pissed off at my situation how annoyed would you be if you couldn't ride your bike etc. You know it just gets you down, the high/low thing.

Does a spinal tap hurt? What are the risks? I was told that that might be done too, the idea of put a needle in my spine freaks me out a bit!

Too anyone out there who is caring for someone else, ensure you get the correct help from social services & the benefits you are entitled too, I don't mean it because your too lazy to work, it is there to help you. That is why pay tax.

sianr profile image
sianr in reply to Shakou

Hi Shakou

I'm soooooo with you on all counts well most. Neuropathic pain drives me nuts . Pain drives me nuts !

I was very active gymnastics ski-ing snowboarding coaching riding my bike (push) gym , volunteering and my job is physically demanding. I had a very active life to nothing in the space of a few months as I fought the pain the physical disability it was causing. I was determined to keep going and probably in some sort of denial that anything was happening, however the pain won.

My mood changed my family dynamics my lively hood became affected by it all .

It's bloody hard.

So I decided I'm not going nuts surely!!! I felt like I was losing the plot I was falling asleep left right and centre I couldn't drive at times as I was so crippled with the pain and what it was doing to me . I started doing some research. I found painconcern online and a local group who get together once a month and after deciding to get myself together I went ...... well what a difference ..... I spent the first day in tears it was a huge relief there were others like me. In fact they recommend this site as well.

Is there a pain management group near you ?

Your family won't understand give yourself time understand all of this better yourself and eventually you'll be able to let them help and they'll understand better.

Duloxetine is a medication used as an anti-depressant however this family of medications are very good as pain control . All meds have side effects . If it doesn't suit change it .

A spinal tap is where you lie on one side a needle is inserted in to an area of the middle of your spine to release some fluid in to a jar just a few drops . You'll lie for a few hours afterwards it can give you a headache however they give you a local anaesthetic around that area before they start. The procedure isn't too uncomfortable .

Take care

Shakou profile image
Shakou in reply to sianr

Hi Sianr,

Sounds similar to me how are you? Do you have to take a lot of medication? Have you back to point your now working, doing sport again? I'm so annoyed about not being able to do anything, I'm sure your same what else can you do if can't do the things you like?

Just a little theory of mine, but have you tried oral health , I mean how's your gums? as with me my mouth always tasted so bad, so much so that I had to keep eating something to keep my mouth from feeling terrible with either dryness or just horrible taste , so after checking with dentist, I did a complete overhaul , meaning I bought a good Oral (electric) toothbrush that took off a lot of the plaque , and I now twice a day brush and use that mouthwash Corsadyl and I'm not saying everything is perfect, but at least my mouth is a hell of a lot better, Oh and I try and use gum as much as I can, and I stopped smoking in bed, (sadly I still smoke in the day) anyway it has taken care of my mouth, but if I miss a cleaning, I can feel it, so I do it every day mouthwash and all and lo and behold a hell of a lot better now, well at least my mouth .

I'm not saying it's everything, but hey' give it a try and let me know ,best Alex

6092177588 profile image
6092177588 in reply to Shakou

You need a spinal tap to find Ms. I have had left side pain for so long. I also have a bad genetic makeup. It hurt so bad but results are important. Thanks

Hello Shakou,

I use 'pacing' to manage my activities against pain and fatigue levels. Whilst I know people who use slow release pain control patches, I tend to take pain relief when I am planning to do something so that it has maximum effect when it is needed most. I use other therapies to be comfortable at home; warm baths, thermal clothing etc. It makes it hard to be spontaneous but it means not giving up on things I enjoy. I take Duloxetine, I was taking it before I was diagnosed with Fibromyalgia. I can't tell you how effective it is because I haven't tried without it, but the way that it works fits with the current theories that this is a neurological malfunction. Try to ensure that you are doing the best for your health generally; eating well and staying active at whatever level you can achieve. there is a lot of information that suggests Vitamin D, Vitamin B and Magnesium supplements help and Omega Oils seem to be good for so many aspects of our health. Like everyone here I find that sometimes nothing seems to work, on those days be kind to yourself and remember that there will be better days too. A supportive network of familly and friends makes such a difference, allow them to help you just as you would want to help them were the situation reversed. Then you all get to do great things together.

How does pacing work? I work long & hard hours anything up 50-60 hours/week more if it is a 6 day week, plus I travel a lot to work including overseas. Plus say if I'm going to cycle say 50 miles, how does it work then? Yeah my diet is pretty good, I have read that booze can be bad for neurological pain, so I'm cutting back & also I can feel a bit weird sometimes if I drink so I figure it is a sensible thing too. Other things like my balance is bit weird, plus I go picking something up then I knock stuff over, not all the time like once a day but that is driving me nuts too. So right if I start new meds probably won't drink or a while, kinda hard when everyone else does just because they do!

My diet is pretty good too, I try to ensure I eat well everyday, hard to stay on mission 24/7 so I allow for times when I can't such as work, I'm not cooking. So probably 1-2 days/week I have a nutria ninja makes good smoothies, I eat a lot of salad, meat & some carbs, plus chocolate at some point! Probably 1 litre of milk a day too. I take Vitiam D supplements as well. I don't eat fast food, take out, pre package crap, don't ingest caffeine, gave up soda pretty much, don't use a microwave. My main junk food is chocolate.

I can't take resting anymore it is doing my head in, I have do something I'm am young, was an adrenalial junkie before this happened to me. I would give up a lot up right now, just so I could race my bikes round.

So any ideas on how I do this?

Kjohnso45 profile image
Kjohnso45 in reply to Shakou

Gabepentin works good for me for neuropathy. Are you taking Soma a muscle relaxer? It makes that metal taste sometimes? Sorry and hope your family understands.

JennSp profile image
JennSp in reply to Shakou

I go to a gym and use the static bikes in there which charts my progress I know that it sounds like you could bike mile on mile, but this may be a safe and half way measure until you feel less tired, after I have been or even any activity, I come home make a cuppa sit down and fall asleep for at least 50mins....but I know this now and just give into it .....willingly...or nearly...

You do say no pain relief works for you. Are you taking anything at the moment? Or have you been prescibed anything?

You also said you are waiting on a pain management course. Clue there - management. You will learn how to manage your pain and that includes the golden rule - pacing yourself. Not dosing yourself up with pain meds then going hell for leather mammoth cycle ride. If you want to try and lead a norma a life as CP will allow yoou must be prepared to meet that pain half way.

Have you seen anyone at th pain clinic yet?

Pacing yourself is NOT doing everything at once. You have to stop while you still feel failry good. It is so much harder to treat pain when it has taken a grip. We wll hope to keep that pain on an even keel, a level you can cope with without having huge peaks. Those are called flair ups and believe me that is screaming and head banging point.

Sorry I am off scribbling away.

It is no good expecting to do everything you used to do. Not accepting that you can't is a form of denial. Yes with management you should be able to do some things or alternatives.

Can write more if you want!

Pat x

Shakou profile image
Shakou in reply to Bananas5

The meds I have been on;








Codein Phosphate


There are more I just don't remember them all. So weaker painkillers don't do much, don't stop the neuropathic pain, Gappentien made me very axiouxus and want to self harm (That freaked me out, what the hell why would I want too?)

I hate that I have accept my live is over as was, plenty of people with disabilities do sport & work. People don't get it work, means I can afford to live, means I can do hobbies, go out see people. Without any of those things what is point! I refuse to not be working I want some self respect.

I did see some pain doctors before, but they just wanted to give me drugs and not treat the cause so that wasn't for me. So I am hoping now they will take on board that I don't want drugs, as I said I hate taking them or work with me to find another solution. But I do accept that I probably do need to take something.

Does Duloxetine cause cognitive problems too? Since I came off meds, I can actually think again clearly, but the pain I need to get rid of that too.

50 miles is a small cycle ride! Please everyone just write away.

Boozybird profile image
Boozybird in reply to Shakou

I think Duloxetine worked really well for me. I took it for six months. The first two weeks gave me a headache and then I don't think there were any side effects. I felt more chilled (not spaced out!) having been quite hyped up and upset for a long time. It didn't work particularly for my back but I ceased to be quite so involved with the pain. It's worth a try for you as you seem to be quite hyper (understandably!) until something better comes along. What is the nature of your pain as you still seem to be quite active? Are you still cycling 50 miles? It may be small ride for you as you were but for someone currently below par this may be temporarily too much.... Best wishes

Shakou profile image
Shakou in reply to Boozybird

I stop cycling/sport in November, I just got my bike too! So not happy about that. Work is quite hard it can be quite physical sometimes, but I try get work where I can just sit down, then move around when I choose.

Some list there.

Well managing your pain isn't just about taking meds. Oh and by the way it is a phallacy that such a thing as 'pain killers' exist. They don't only pain relief.

The pain management team will work with you and not against you but you do, as I said, have to be realistic.

My David was 36, had an excellent career in the Royal Navy when he was severely injured in the line of duty. He broke his back, was medically dischatged and never worrked again. Devastation didn't come close to how he felt. Even after many years e still has anger and fight in him. So you aren't alone in how you feel.

Whatever the cause of your pain, and very few ever get a diagnosis, it is here to stay. The whole idea of coping is to maintain an even level of tolerance which you can live with. If you push yourself too far you can't expect and meds and or alternative therapy to put you back together.

If you are looking for a magic cure that stops pain and allows you to contunue exactly in the lifesyle you want you will be more than disappointed.

Counseling may help. Wife, girlfriend, partner, family? Someone who will understand and support you.

I lost my sight 30 years ago and when the consultant told me there was absolutely nothing he could do I had no choice but to adapt. They found the cause which sort of helped to know why but still made no difference to me. You can adapt and face the challenges of life or throw the towel in and say why bother. Believe me I was never angry, didn't have time and now. my life is as full as ever. I travel te world on my own, garden, keep dogs and full time carer for David. Life is for living and I love life with all its foibles.


Rosepetal60 profile image
Rosepetal60 in reply to Bananas5

Brilliant reply

You have a job. That means that you have funding available to try things.

1. See Dentist to check for filling or gum trouble.

2. Zinc deficiency can cause taste changes, so worth looking into.

3. Taste is linked to the ability to smell so it is possible to have a sinus input to the problem.

You mention heavy athletic activity. It may be possible that you have a temporary immune problem. Lots of physical activity can reduce the ability of the immune system. I do not know what the present state of research is on this issue.

Now the difficult bit. You are going to have to study yourself and how you respond to things. This way you learn what improves your quality of life and what decreases it. What your body can or cannot do changes as you age. So it it is possible you are moving to the next stage of growing in maturity and you have not responded to the different requirements of the body.

On of the tools that helps in studying yourself is meditation and mindfulness.

Meditation_A_Way_of_Awakening_-_Ajahn_Sucitto.pdf. A free download from:

is a very useful book. It will help you look at yourself.

I do not know how old you are. So cutting down on the physical activity may be appropriate if you beyond a certain age and the activity is replaced by something like yoga or t'ai chi. when you are younger the body easily repairs the damage done by physical activity. As you age products from damaged tissue does not get removed so easily. products from damaged tissue accumulating in the wrong places can cause body upset. Not enough research has been done on this issue so I am quoting a possibility.

Worth looking at the Alexander technique. It is a method for looking at how you use itself and helps you learn and develop new and improved ways of using yourself.

Hope I have been helpful.

Pins and needles, chronic pain, shooting pains like electric shocks, metal taste in mouth, exercise resistance, fatigue.

Any brain fog maybe ? brain fog is where you cannot think straight or concentrate for long as you did before, it is NOT depression,

I remember all these symptoms well, now they have all gone, thankfully, almost overnight, once I was optimally medicated, all symptoms were down to Low Thyroid and Low in range B12.

Only thing is too many Thyroid and B12 Deficient patients report that Doctors often say your Thyroid bloods and B12 bloods are 'NORMAL', yet they don't feel NORMAL so many get missed and left with these terrible symptoms.

I had blood test recently everything was fine far I know expect for Vitiam D which I now take daily. It can't be that simple, I have physical therapy too my person said it is nervous system defect causing the problem. The pain came after an injury, so it can't be related to that up to then I was fine. Three hospitals couldn't have missed could they? I'll get checked out again nothing to lose. I should point out this has been ongoing for the past 5/6 years, I lost my job, my house etc over this but I don't care about that anymore. I care more about everyday being in pain, I have no one to talk about it either everyone is bored of hearing about it. The only way I can work is part time, self employed cause I can't manage a normal job way too much for me.

I'm 35 so young and can do sport, I had cut down to zero after physical therapy started because in effect we are trying to rewire CNS I did ride about 30 miles over two days I was in so much pain I couldn't walk. So now sport, if I stand up too long it is painful, if I sit too long it is painful it ruined watching Star Wars to be honest. I am very bored of this, the NHS has been shit at helping me out, I can't work properly or do the job I want to do, I can't do the sport I want to do, I feel like crap most days, nothing is really working, drugs make me far worse and physical therapy is painful.

I'm not giving up I'm asking for help to overcome it, I'm just fed up of it and want way out, so far it seems a long way off.

majria profile image
majria in reply to Shakou

i'm right with you on this one. I have been a very active person in my 40,s and very independent. but since last year after my back went, with a slipped disc i have been in chronic pain. now im suffering with severe sciatica!! im fed up and my mood is low, because i can't or don't feel like doing the activities i used to do because after about 30 minutes of bending over gardening its time to stop. When i used to be in my garden/allotment all day long, and now i feel like a f+++ing cripple!! i know how you feel because the NHS have such a long waiting list. I am waiting for the 7th March when i go to the pain clinic, what a life a just waiting for these appointments only to be told you have to manage your pain yourself or shove pain killers down the throat for the rest of your life.

My sympathies for you and take it easy you're not alone!!

Hi Shakou

Duloxetine doesn't cause me cognitive problems - in fact, I'd say it's the only thing that gives me any clarity.

It's obvious you're in a bad way at the moment. As Paton has already eluded to, unfortunately there isn't a magic wand on this site - if there was we'd of all waved it at each other to solve our different problems and pain!! There has to come a time when you need to accept your situation for what it is. No one can give you the miracle cure or solution you seem to be looking for.

All we can do is give support and the odd tip or two on how to manage each day, flare-up or when it happens, set-back.

We 'listen to' each other's rants, swearing, tears and stories with empathy & sympathy but as much as we would like to, we can't make it go away I'm afraid.

I'm so sorry that you've got chronic pain and that you've joined this 'club'.......We've all had to deal with a major 'life change' in one way or another. Many still probably haven't accepted it or really ever will - I'm certainly one of them and was bitter & angry to start with but it took up so much energy that I felt even more fatigued. I don't know how I've got through the last six and a half years (or my family and friends) but it's happening and I'm stuck with it. Yesterday I was a young, fun loving, registered nurse who loved their job - today I'm physically disabled with horrendous pain everyday.

It is what it is..........

Keep us updated on your Neuro and Pain Management appointments.

Try to keep positive


All good advice that you have been given off others as I read down....I too have neuropathic pain (24/7) all down the right side of my body which is always there I feel it like as if My body is in a freezer and I think I am cold but when others touch my skin I am ok to their touch....also feels like an electrical shock when I touch myself...mine is due to the fact that I had a stroke while coming round for a day case operation....but I am slowly too getting my life back....nothing to what I would expect it to be like...but who knows where I would be with my life 4 years on. We are all getting older day by day, that's what I keep telling myself and how do I know if I would have been capable of continuing the lifestyle I was living at the point upto my change in circumstances. PLEASE don't be afraid of taking the painkillers you are offered, In moderation I would suggest, simply because it is not what we have done in the past, I too am awaiting an appointment with the Pain Clinic although I have been told that I would get a referal 3 times previously this never happened, but I keep on reminding My doctor and the hospital consultant, almost pretending that I don't know that they have 'Forgotten' me Or so it seems....No one can see my pain (or Yours) or feel it, so I believe we have to be proactive in our own management recovery....and by that I mean in getting a bit better than we are now, as I understand that Neuropathic pain does not go away...sorry for that one...I do use relaxation techniques when i go to bed, or even during the day and also use a little mindfulness, This I was fortunate enough to learn when I was fit and Well and used it everyday to relax at will and I'm not always good at doing this, but at least its a tool I have when I really really need it....I'm doing a bit or research into Barometric Pressure and Pain, I have noticed that when the weather changes So does the pain level go to the extremes..(reminds of the old tale granny would say Oh my Arth er itis is killing me it must be going to rain ! actually never a true word spoken).I read that as we have 'Holes' in our bones, these are filled with air and so when the pressure changes, this affects the 'Air Pressure' in the bones making it more painful, I am at present mapping the pressures and marking down my pain levels...I hate that Q on a level of 1-10 where is your pain Now...I want to scream its at 99 way off the spectrum....but one very nice doctor told me not to say that, as I wont be taken seriously that my pain is So painful, it is off the scale....he suggested that its about a 7 during the day when its bad and it's a 9 or a 10 thru the night.....Well sorry folks out there if you are medical staff, but I have gotten thru 4 years using this guide line..for my own use and to my doctors..and I feel that it makes my pain, seem less of a problem. I feel that on a general basis day to day I cope with my daytime pain, usually, it is on an evening and thru the night when things slow down & are quiet that the pain levels kick in...So I like to take my meds more on an evening and thru the night When I can't sleep because of the GP agreed with this....maybe only to placate works..mostly for me...but I will be interested to see what the pain clinic comes up with as regards day to day management of neuropathic pain. I have a friend tell me that Pain clinics are no good! I replied but I have to find that out myself....and she remarked that be ready for them to cut your medication down to half !!!! don't expect them to up your Meds...They drop them down most of the time ???? Well I will insist that if they want to do that, They will have to admit me to hospital to monitor me over a 48hr period....she says they won't do that....and maybe they wont but I am proactive in my own ongoing welfare, and they will have to take that on board. How can they monitor efficiently 24hrs if they don't have you in as an inpatient.....they will just have to take my word....this is a friend I might add who has terrible pains in her neck and back, and has been on higher levels of meds than me, but she also does all her own Housework, ironing, decorating, gardening, you get the picture....We all know that those tasks are not viable for those of us who suffer in pain... Real Pain. Cheers Take Care

Rosepetal60 profile image
Rosepetal60 in reply to JennSp

Gosh, you could write a booklet. So readable and true.


What's Palexia SR please? Never heard of it.......

I'll do some research myself but what's your experience/knowledge of it?



I meant to add..... I've done a four week Pain Management course too. Some of it was helpful, some not so much but I went into it with an open mind and that was vital, I found.

Don't go in with high expectations that they're going to 'solve' anything though, as Paton has already said. It's exactly as its title suggests - management.

You'll have been referred for it as normal medical approaches will have been exhausted but that's not to say you're not treatable! As human beings it doesn't make sense that the vast knowledge in the medical science world can't make us 'better' in the clinical sense but as patients, we also need to be proactive in our treatment - as has already been stated on this thread.

The Pain Management course will teach you strategies to help you but you need to be accepting of these strategies - to begin with your hopes & expectations may be 'wilted' a little as they'll say from the offset that they're not a cure. Stick with it, put effort in and even if you only get a little something from it, it'll be time well spent!

I had days when I wanted the facilitators and other members of the group to all just go away, as my pain levels were really high so wasn't wanting to even acknowledge that they existed and wanted them to leave me alone but I also had days when I was actually enjoying being amongst a group of people who knew what I was feeling!

The activities may surprise you, may enlighten you or may p%@s you off but all in all, it might just teach you a thing or two too!!

Best of luck to you - try to keep positive.


Hi all thanks for writing back!

I took 200mg of gabapentin, went for 100mg, I was wrecked me, thoughts of self harm, to me & others so yes I don't take it anymore I still get muscle spasms it causes over a month later, that was christmas ruined this year. This happens so far with any medication I take, it just makes things worse. I gave up taking valium, I didn't want to be addicted to it, then have to deal with that. Does it make sense why I don't want to anything now?

I went mental down the phone to the hospital because after over 4 months they had cancelled my referral & hadn't told anyone, well I'm going for an initial meeting tomorrow with a view to in patient pain management course. What are they like, what is a typical day like on this courses, do you have to be on a ward, get your own room, can take I my laptop, I eat probably different to other people will that be ok?

Also has anyone bought this book;

If so did it help? It is a lot money, I am willing to spend money on things that will help but only if it does.

I also use the recognise app too, has anyone else here used that?


I have tried Amitriptyline it ruined me, total zoned out a low dose refuse/will never take it again.

Gabapentin as I said below made me ill very quickly at 200mg, it made me want to self harm & harm other people, I'm still suffering from side effects I never want to touch it again. It scared me so much that I am really very nervous about taking medication. No I don't have history of anything like that at all.

The pain management course I went on (at St Thomas' in London) was basically this:

We stayed in three bedroom flats on the hospital site. Own lockable room with wardrobe and desk. Room was cleaned and bed remade every day too by the domestic staff (it was the hospital staff accommodation but the course had their own flats for the students!). It had a small lounge with a tv and a basic kitchen with fridge & microwave. Two toilets and two showers - all flats are shared by same sex.

The day started at 0830 in a separate part on the hospital. You could access it from 0800 to make tea/coffee and toast if you didn't have your breakfast in your flat.

The days run from 0830 to 1630/1700 in a 'classroom'. You're generally in a group of ten and you stay in that group for the course.

There's all sorts of activities and sessions with different clinical specialities. Some you listen to some you get involved in and some are gentle physical activities. (You do an exercise sessions everyday which is glorious once you get into it - it's not a full gym workout though!)

Lunch is provided each day but you can get your own if you wish.

Regular breaks for drinks and snacks.

Once the day's ended you're free to do whatever you please. (You have to sort your own evening meal).

In St Thomas' they're strict on time which is good but no laying in!

Obviously others will have had different set-ups.

Like I've said before, it's a good course that you can make 'great' if you put the effort & time in. If you get offered it, I would say go for it!!


Regarding books - I bought many different ones to get an overview but I haven't read the one you're talking about.

I have to say I found the Chronic Pain for Dummies book good for me and friends & family. Basic but covered everything!


Thanks for that. I'll have a look.


There is a condition called Complex Regional Pain Syndrome (CRPS) otherwise known as RSD. Take a look at the symptoms because you might fit the bill. There's also a Facebook page, which is extremely informative. Meanwhile google the symptoms and I'll see if I can find a link. Other than that, there are a number of autoimmune diseases, including SLE, which can lead to pain and fatigue. You could also try the Turmeric User Group on Facebook, used by both people and for their pets. Turmeric gives great pain relief for many people and if you're not on other med's, then it's worth a try. I noticed some people on there have fibromyalgia and have found relief, but be aware that not all Turmerics are equal. Organic is usually best, but the Facebook group have a list of verified ones that are known to be good. I use the 'East End' brand which I know is good. Some of them have had the Curcumin removed and had fillers added. Turmeric typically contains 3-5% Curcumin. Don't buy capsules, unless the Curcumin levels are verified, as they can contain levels as high as 95% and that can be toxic in high amounts. There are loads of files, info, clinical research and it was set up by an Aussie Vet, Doug English. It now has over 80,000 members worldwide and many success stories. Turmeric is oil soluble and has to be taken with Cold pressed Virgin/Extra virgin oils, or fish oils - but not veg oils as these are inflammatory- and it should be taken with freshly ground black pepper to increase it's bioavailability. Here's the link for the website:

Under the Budapest Criteria you need 3 of th 4 main symptoms for a diagnosis

CRPS Symptoms - Description:

FOUR Main Symptoms/Criteria for a diagnosis of CRPS:

•Chronic burning or freezing pain - includes allodynia; extreme sensitivity to touch, sound, vibration, wind, and temperature.

•Inflammation - this can affect the appearance of the skin; bruising, mottling, shiny appearance, blotchy or pale appearance, and tiny red dots are some examples.

•Spasms - in blood vessels and muscles of the extremities, called vasoconstriction,

•Insomnia/Emotional Disturbance - (including limbic system changes such as short-term memory problems, concentration difficulties, and irritability).

Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time. There are a great many additional symptoms that can occur but not all patients will have all symptoms. Some of the symptoms may even be transient depending on the Stage the patient is in; the time of day, weather, noise level, current medications, whether or not the patient was treated with ice or hot/cold contrast therapy, etc. What makes this disease even more difficult for Doctors to diagnose and treat is that patients can present with different symptoms at different times, even from one appointment to the next.

1) The CONSTANT PAIN can be described as a burning pain. It feels as if a red hot poker were inserted into the affected area. Or a freezing pain as if in the middle of a sub zero blizzard it is also described as throbbing, aching stabbing, sharp, tingling, and/or crushing in the effected area; this is not always the site of the trauma. The effected area is usually hot or cold to the touch. The pain will be more severe than anticipated for the type of injury sustained. This is a hallmark of the disease. Allodynia is typically present as well. Allodynia is an extreme sensitivity to touch, sound, vibration, barometric pressure changes, loud noises, wind/breeze, temperature, clothing, and even the gentle touch of a loved one. This makes it increasingly difficult on the spouses, children, and other family members; as their softest touch can now cause pain instead of comfort. If the patient has not been properly diagnosed yet and these sensations not properly explained, these symptoms can cause extreme duress and confusion to all involved.

2) The INFLAMMATION is not always present in the same form but it can take various forms; the skin may appear mottled, become easily bruised, bleeding in the skin, small red dots, have a shiny, dry, red, and "tight" look to it. In addition; increase in sweating usually occurs as well as swelling in and around the joints (shoulders, knees, wrists). In some patients a lack of sweating may occur, and some even go back and forth between the two.

3) The SPASMS result in a feeling of coldness in the effected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back. They can involve not only muscles but also blood vessels.

4) The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. CRPS affects the limbic system of the brain. Doctor Hooshang Hooshmand described it well: "The fact that the sympathetic sensory nerve fibres carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain." This causes many problems that might not initially be linked to a disease like CRPS; chief among them are depression, insomnia and short-term memory problems but also includes agitation, irritability, and possibly even poor judgement.

CRPS can cause Depression, NOT the other way around.

CRPS causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the patient's pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep, which makes the pain worse and so the cycle continues. Many patients can feel they are losing their mind as their ability to remember things, short-term, greatly decreases. Things like: what someone told you an hour ago, what you had for lunch yesterday, whether you took your pills this morning, what you were just talking about, etc., are quickly forgotten. You are NOT losing your mind. Loss of short-term memory is part and parcel of CRPS. Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word. The patient's ability to concentrate is also lessened while their level of irritability is increased. These problems get even worse as the sleep cycle continues to worsen, weeks and months on end building a sleep deficit you cannot seem to recover from.

Do these symptoms sound familiar to you? Do you also sometimes have an increase in your pain when your stress level is higher? Or the noise level is higher? Do you want to crawl into a hole by yourself and pull it in after you? Does the simple rustling of a newspaper or the soft touch of your spouse send you through the ceiling in pain? Do you sometimes have trouble finding a certain word? Do you sometimes completely lose track of what you are saying? If these symptoms sound familiar, know this; you are NOT crazy and you are NOT losing your mind. You are also not alone, not anymore.


There are many additional symptoms that can be part of CRPS besides the four main ones. These include but are not limited to;

- changes in skin temperature (warmer or cooler compared to the healthy/opposite limb).

- changes in skin color (skin may appear red, dusky, covered with red dots, cyanotic, blotchy, or pale).

- hypersensitivity to touch, sound, vibration, wind, noise, temperature, barometric pressure changes, water temperature, etc.

- irritability.

- depression, fatigue, and/or insomnia.

- changes in hair/nail growth (nails can become brittle, cracked, or grooved - increased/decreased hair/nail growth).

- skin can become shiny, changes in sweating patterns - increase/decreases.

- bone and muscle loss/changes, atrophy/weakness.

- swelling and stiffness in effected joints.

- throbbing, crushing, tingling, shooting, aching, stabbing, burning pain in the effected area.

- tremors (shakes).

- problems moving the effected extremity/body part.

- migraines/cluster headaches.

These symptoms can come and go and alternate over time, changing from month to month and year to year depending what stage the patient is in, what treatment they are on, what medications they are using, how successful these treatments are, how the disease is progressing, and/or what other disease(s) might be introduced along the way. One of the many problems for Doctors in treating this disease is that many patients present differently and the symptoms can vary not only with the stage the patient is in but even the time of day the patient sees the Doctor!

Under No circumstance must a patient suspected of having CRPS be given Ice, Hot and Cold Water Contrast Therapy or Aggressive Physio, these are all known to make the condition worse and in some cases have so badly damaged the blood vessels that Gangrene has set in and amputations have had to be undertaken to save the sufferers life.

Suspected CRPS cases must be urgently referred to the team as set out by the NHS.

Your care team

Due to the complex nature of CRPS, a number of different professionals will usually be involved in your care, such as:

•a physiotherapist – who can help you improve your range of movement and coordination

•an occupational therapist – who can help you improve the skills needed for daily activities

•a pain relief specialist – a doctor or other healthcare professional trained in pain relief

•a psychologist – a specially trained mental health professional who can help with psychological problems caused by living with long-term pain

•a neurologist – a doctor who specialises in the treatment of conditions that affect the nervous system (the nerves, brain and spinal cord)

•a social worker – who can provide information and advice about extra help and services

•an employment adviser – who can offer support and advice to you and your employer to help you stay in, or return to, work

JennSp profile image
JennSp in reply to

WOW you know your stuff thanks for all the input there....Mmm sounds all too familiar, so why oh why does my GP just say You're doing really well ya know I could scream...but of course I don't....Well maybe I should and Yes what was that word I was looking for....Cheers......Thanks....

Hi Dan, I agree with everything you said but just to add that gabapentin and worse pregabalin did terrible things to my brain... I got 'word blindness' from which I haven't really recovered 4 years later! 🙁

I'm off to the pain clinic, or whatever you call it. So I'm going today I have done a lot of reading about a Spinal Cord Simulator, has anyones else tried one? I'm going to ask if they will do it for me, the risks seem worthwhile, less than medication always.

20mg Dulxtion, I took it last night before sleeping. I feel high today, my stomach is doing backflips, thought I was going to puke, been in bed again for an hour feel like crap unless it improves I'm going to stop taking it. This happens with every drug I take, makes me feel sick, makes everything worse. What else is there besides drugs & SCS? Drugs really don't work for me at all, that is every drug I have tried so far does this.

Rosepetal60 profile image
Rosepetal60 in reply to Shakou

You might like to consider Traditional Chinese Acupuncture. But please don't confuse this with the usual off the peg Acupuncture.

If you need any help on this, please message me

Shakou profile image
Shakou in reply to Rosepetal60

I too have thought about this, I asked my physical therapist about it, I was told it isn't right for me.

Rosepetal60 profile image
Rosepetal60 in reply to Shakou

Interesting reply, has your physical therapist I wonder had a minimum of 7 years training to give this reply to you ???? Have you asked him or her how many years training they have had ?


The chances are, don't quote me on this though, that the pain team will want you to do the Pain Management course first to see how you may be able to utilise the strategies taught before considering you for an SCS.

There are a lot of people on this forum who have/have had or are waiting for SCSs - I'm waiting for a DRG stimulator but it's not an immediate treatment.

You never know, something else may help you first.

Duloxetine can have the side effects that you're describing but give them a chance (unless you get serious side effects).

I think at the moment, you're really stressed and in pain so not really allowing yourself or body to calm a bit.

Take a deep breath, relax a little and give yourself time to think.

Hope the pain clinical has answered some questions.

Keep us updated......


Shakou profile image
Shakou in reply to RAYJAYC


Just got home from the hospital/clinic anyways they want send me for an MRI Scan, (again, I have had lots of these!) to see a shrink the doctor thought I might have PTSD so want to check that out that, then start the pre treatment for the Pain Management course which they think would work for me, they think they can help! Yup they said drugs don't work is what they said and that my current medication is the best thing for me right now, however the side effects are already too much for me.

How are you meant to deal with pain, when the medication either doesn't work, or makes me really sick? What I am supposed to do for 2 months? That is when I see then again.

The doctor thinks I have something called central sensitisation, they did an exam on me and stuck a sharp thing in my foot, I nearly kicked her in the face!

I also remain positive & hopefully that I will get better than I currently am, I'm sure people know how it goes the depression kicks in somedays its hard one to beat.

So after being told that drugs don't work for me, what options do I have? I had hoped something like SCS would help, if it or something like it does work for me how long have people been waiting for? I'll pay for it if I have to, I'm not rich at all but I'll find the money someway, I really can't wait another year.

Thanks everyone.

Why would your Doctor think you had : Post Traumatic Stress Disorder? ( PTSD)

Shakou profile image
Shakou in reply to Rosepetal60

I was assaulted this is how all this happened.

Rosepetal60 profile image
Rosepetal60 in reply to Shakou

There is a PTSD community here on Healthunlocked

Shakou profile image
Shakou in reply to Rosepetal60

Right now that is just theory, so I don't want to go down the road until I know more, keep it simple is the best thing to do. Thanks for the suggestion.

Have you seen a specialist councellor over several weeks or more to help you with this ? you might also consider mindfulness , not that I know much about it.

Many people cannot tolerate drugs for pain relief, but do find relief in alternative treatments. I have been going for Traditional Chinese Acupuncture for about 16 years. Worth every £. But it can be difficult finding an Acupuncturist using Traditional Chinese Acupuncture with advanced training and many years of experience. I tried 4 before I found the one I am with now.

Shakou profile image
Shakou in reply to Rosepetal60

The consultant yesterday said that they will help with anything like that, it is part of what they do. With regards to Acupuncture it has been explained to me that my nervous system is hyped up, (hence why I have the reaction to medication) that doing Acupuncture is only going to make it worse right now.

Fortunately with me having Traditional Chinese Acupuncuture where the Meridans are treated and not the nerves. And the whole body is treated and not just one area, my system can be helped with pain relief etc.

I also cannot tolerate the usual prescription pain relief drugs.

The type of Acupuncture I have is different to the NHS type.

Hi I thought I'd let you know how I'm getting on my pain is neurological my physical therapist believes this and so does the doctor from the pain clinic. It is caused by central sensitisation, I have a lot of signs of it. Which includes the weird taste in mouth, which more like an electrical current today, when nervous system was being simulated it changed, some of my teeth went numb, my balance is also pretty bad at the moment too.

I was concerned about taking Dulxtion however it seems help to help actually the first drug that has! I can actually walk a bit now, which is great went for walk today to the store so that is great! It hasn't stopped everything though the execrise that I have to do at home, really piss of my nervous system had a headache all day, deep joy... I'm going to see about increasing the meds I take, but I have to really careful as I'm sensitive to pretty much everything right now.

So the outlook is good I have put a lot of things in place to help me it is down to me know to get on with it, I have do to the neural work no matter what. I was hoping to get back to work, but at the moment I am very aware that just by doing what I have been asked to do I'm already very tried at its not even that late. The way it is explained to me it is better for me just really work hard only recovery which in its self is a full time job. So I'm actually thinking of signing on for a few months, then as heal get off it & move on.

If anyone has the same issue as me, wants to know more then send a message if I can help I will it is the start of a long journey so have people along for the trip is always a good thing. I hope the rest of you guys make it too, more over I think finding out what is wrong, then knowing how to fix is it is a battle, followed by making it through treatment, beyond that I just don't know.

Take Care folks, remember to laugh & play everyday.

I have Cronic Pain also, it effects my hands. This morning I had such a horrible, horrific pain in my left hand that It made me cry for hours, till about 11:00. Its hard whenn nobody re,ally knows about how much a person goes theough with this pain. But Im here to listen that alone helps me.Thanks

These are the antioxidants that the RSD/CRPS Research Foundation told me about. Useful for nerve damage pain

Antioxidants are key in nerve damage Nerves and muscle cells are the biggest producers and the biggest consumers of antioxidants, so when they're damaged, they need more yet can produce less. N-AC and methionine (SAM-e and Co-Q 10 are a form of and a precursor for methionine) are antioxidants used within those cells, so yes, they're usually very helpful. So are the antioxidant vitamins (B complex, A, D, E, C, and K). Check for issues with your meds. For instance, ubiquione tends to interfere with the SNRI Lexapro, but I found for myself that co-q 10 (a precursor to ubiquinone) did not. Test everything and keep notes :) //Isabel

I do understand your anger and frustration .

Medication caused most of my condition as my brain reacted very badly too opioids but that is my story .

What has helped:

Distraction something to focus on because pain is so bad you cannot go with it,

is what I use there are no options for me try and use a different part of brain when in absolute agony :audible ,film read .

put less stimulus in ,dark room ,quiet or music

being in the moment ,

setting yourself small achievable tasks not comparing now with how it used to be is hard but the brain has the ability to deal with a lot it needs time when traumered by too much pain etc to recover.

Mindfulness is a discipline you can put in place won't happen over night but break things down to half hours , don't think about the big picture right now cause it won't help .

Diarising pain is helpful it has taken me 2 years to be able to communicate and came onto site about 10 days ago so I apologise for grammar ,spelling errors etc now!

Things like managing condition will help but there are guides to dealing with chronic pain etc that you can do now .

Dopermine naturally occurs and you shut down when it gets too much it's like the off switch being flipped.

Keep warm .

Static exercise even if infrequent will help ,I strap myself too exercise bike and pedal and its agony but after 10 minutes serotonin will start to be released and the brain gets a bit of help to deal with pain plus circulation gets stimulated.

Try and think want u can do rather than what you can't .

make some time to cry and grieve for what you cannot do also but try and compartmentalise this so it doesn't take over .

It is good that you have support I did not but don't shut them out .

Look at diet minerals vitamins and protein are important it will help you to deal with pain.have other stuff to say but don't know if this will help.

Keep it simple better to do little repetitive tasks that start to build up to a semblance of existence.

When I start feeling sorry for myself I think about people who have locked in syndrome etc it fills me with the determination to carry on.

Hi Shakou ive just been reading this year old post and I suffer from this condition. You sounded exactly like me about this crap condition and I was wondering how you are doing now. Your a year into it, are you coping any better? I hope so , love ❤️ Jan x

Shakou profile image
Shakou in reply to Janethaywood

Hi Jan thanks for your post, I am doing a lot better thanks.

I have just stopped all meds, I feel fucking terrible coming off Duloxtien I think I'm over the worst of it now though. I don't use weed for pain anymore, now that the side effects of becoming less I'll drink less or stop altogether as I used that combat the side effects.

My prolapsed disk has healed I believe, I'm manage central pain with more pain management techniques, thankfully I work freelance, not that I'm getting back into work my income will increase.

I would say to anyone, don't take medication unless you have to, it caused me so many problems with friends & family it just affected everything.

The key is get yourself on a pain management course, it does work. Though you need to ready to believe in yourself & the process it does work.

I'm getting back to sport now, too. I mean you can't be the way you was before it happened, though I can live a productive happy life, have a professional career etc just at a slower pace than normal people.

It can be done, you can heal you just need to accept that your life style will have to change to do it. Once you do, you will be fine. Besides change isn't a bad thing, embrace that shit you will be fine.

So glad to hear your recovery is better😊 Good luck with it all x

Yes, I have DDD & Osteoarthritis but was declining health wise with all over body pains and other stuff, dr said fibromyalgia but I disagreed, after further blood tests over a 12 month period I was diagnosed with b12 deficiency, I also had low folic acid, low vitamin D and magnesium , low iodine. Lactose and gluten issues. Since treating all these I am so much better

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