injury based hyperalgesia and allodynia

hi alwaysalone  i know this a bad condition do you reflect your user name in the condition you use on hear .? i hope you don't think i am nosey only doctors are very reluctant to talk about this and seem to no nothing about this i was undiagnosed for 27 years all the years  traumatized by pain which gps said it was anxiety  it makes it worse because the medical records of the accident are still not found .  have you been suffering with any pain to the damaged area ? i am 49 years old now and i have had the condition for 31 years now  to be honest i feel lucky to be alive . how would you discribe your health and well being   i hope you are coping well if it helps talking about it feel free to contact me  thanks for your reply i makes me feel a little better for not being the only one only to the NHS we are quite a  rare condition.

Hi Neurojohn.

Yes, my username reflects a lot of things really, all related to missed medical conditions or ones the doctores refuse to acknowledge.

I don't think you're nosey at all. This is a forum and questions are asked to help in areas where the doctors ignore.

Do you take medications for the confitions and pain?

I was also told my ails are just anxiety or all in my head so i'm not surprised to hear you were told the same.

I have been suffering with pain to the affected area, however it's definetly not isolated to there.

I am around the same age as yourself and thought i had fibromyalgia, which i've not entirely ruled out or had checked. It's all intertwined, though, with similar symptoms so i'm hesitant to waste more time on doctors.

My mother has fibromyalgia.

I guess i would say on the whole i'm healthy, although i do have severe anaemia. I try to cope as best i can but sometimes it pushes the envelope and gets a bit too much.

I'm glad answering you has made you feel better and realise you're not the only one of us out there.

I think there may be more of us than we realise, though, because the doctors are so reluctant to talk about it and even acknowledge we exist. I have actually only come across one doctor who seems to understand and realise that what i tell her is feasable and possible, and she has mentioned on occasion how i feel pain more intensely than others she has treated as a doctor. That said, i'm unsure if she knows of the terms or believed me at first (if at all now).

Likewise, if you feel you need or want to talk, you're welcome to contact me at any time.

Do you mind if i ask where you are?

I wish you all the best and hope you feel better.

Take care.

hi alwaysalone   yes i take medication for the condition pregabalin 100mg twice aday   co-codamal 30/500  8 aday and mirtazapine 45 mg diagnosed with what doctors call anxiety or depression i was involved in a car accident when i was 18 resulting in a head fracture a perforated ear drum on the left hand side after 26 years of pain and misunderstanding from doctors i asked the doctor for a MRI scan on my head the doctor turned around and said i didn't need a MRI i pushed for it and finely in 2011 i got an appointment the results were damage to the left-side  portal  or stem neurologist told me nothing at all a part from that in 2013 in pain managment the diagnosis came hyperalgesia and allodynia breaks in the polarization or cortex in 1985 after leaving hospital i got better then pain started 11 years after  all them years of grief it makes me  think this condition is not even categorized i looked on the NHS web site and all they talk about is hyperalgesia in rats  very worrying basically the neurologists hear do not know the out come of this so it is quite rare doctor even look at me funny at times .  i live in southport lancashire  PS  thanks for replying to me .  do you think the condition is a disabled one ? or just your abillity to function properly . thanks.

Hi Neurojohn.

I'm sorry to hear you've had such a hard time getting something done or even being heard by your doctors. To have to ask for an mri after such trauma is quite ridiculous! I would've thought the doctors would have sent you for one long before they did.

I found my problems worsened when they prescribed pregabalin for me so i stopped taking it and went through hell. I actually still have problems from it but after all the research i did and discovered about the drug, i'd rather put up with my pain than the pain caused by that medication.

Do you mind if i ask how long you've been taking it?

I also don't believe the doctors know much about the problems, and that they definitely don't know the outcome. In my research and reading about hyperalgesia and allodynia, i have found nothing to say it will worsen, only that it will not improve.

In answer to your question; i think it is both a disabled condition and an inability to function correctly because they are intertwined. The pain can be disabling therefore leaving you unable to function properly.

I get the impression that most doctors now call the condition fibromyalgia because, i assume, that is now a "proven" condition that is accepted by many.

The main thing is knowing you aren't alone and that the doctors (as we both know) are quite often dismissive and wrong where certain conditions are involved.

I hope some of that helps.

hi alwaysalone.  has of pregabalin i have been on it 3 years but last year my legs felt num and heavy so i lowered the dose right down  and my legs went better more feeling in them pregabalin is a nasty drug it's better to do without it if you can. thanks 

hi alwaysalone  did doctors try gabapentin with you ? supposed aimed  at pain than nerve block simular to pregabalin .

hi alwaysalone did doctors try gabapentin with you .supposed to be more directed at pain . ho i have a appointment at the walton centre come through 4th of july asked dr for a better pain killer for severe pain attacks that come from the condition . hope you are well.

Hi Neurojohn.

It's good to hear from you.

How are things with the pain? Did you leave the pregabalin behind?

The doctors mentioned nothing about gabapentin to me. They were set on me taking pregabalin or nothing.

I'll make an appointment and see a doctor, though, see IF they even know it exists.

I hope you're feeling better.

Let me know how you're going and how you go with the sppointment.

Hopefully they can help you more than you've been helped.

Thanks for thinking of me.

All the best

hi alwaysalone . the severe pain attacks have been yearly last one lasted over three months long october to january 2017 currantly quite stable on 100mg aday pregabalin so kept to a minimium . i said no to gp when i was asked about gabapentin i said it was very simular and that i don't think it would be strong enough for the pain levels experienced .i asked for morphine or ketamin lols .  but its got to have a punch with it that cuts the pain  because has you know to well its powerful so i will keep you posted on events  at the neurologist centre liverpool on reading about gabapentin pretty much have the same problems has pregabalin ps thanks for the support there are only two of us so far in the convo. wish you well and i will keep you informed .

Hi Neurojohn. I'm sorry to hear about the attacks, especially the three month one! I've been unable to get to looking into the gabapentin as yet but i will. It's a shame it has pretty much the same problems as with pregabalin though. They need to find something good and decent. Maybe they will when they need it!.

Yes, i've noticed we are the only two here, but at least we have each other and can bounce things back and forth, let each other know what we find. You're very welcome for the support and have no need to thank me. I'm glad to be of some help, even if it's only to help us look for something that may help you manage your pain better. Please, yes, keep me informed, and i will do the same with you.

I do hope you feel better and the pain subsides.

All the best and take care until our next chat.

hi alwaysalone . in the 31 and a half years of having this condition i have noticed sensitivity levels can be reduced by simply rolling up a towel rounded and placing it in the ridge of the neck alters the sensitivity of the condition its worked better than the medication pregabalin ever has . but this mite not be the case with you i tend to agree with you that they will only do things last minute . but what i do not like is the pain is that powerful it can stop me breathing for short peroids during amplified long periods of induced pain. but the crazy thing is my head and brain same to some how put things back to what is as normal as can be with the condition. a very unpredictable condition. ps  no wonder there are only two of us.  but spirts are good dispite the uncertain future to tex book clinical practice's of the condition. all the best.

Hi Neurojohn.

I have always used a rolled up warm to hot towel or hot water bottle at the base of my neck but thought nothing of it until you mentioned it. There have also been times where i have just used a rolled towel without heat.

That's interesting.

A neurologist once told me my brain disassociates itself from my body for a short amount of time, but the time varies, and then "resets" itself in alignment with my breathing.

She explained nothing to me, just told me that.

Maybe something similar occurs when your pain is powerful enough to stop your breathing...?

It certainly is an odd and unpredictable condition!

I hope you are feeling well today.

Take care

hi alwaysalone. yes all well at the momment  yes right from having the injury i started putting a finger on the back of my neck but i never told gps this it was like a secret weapon against the miscomuniction of nerve signaling works by changing the pattern of the nerves in the head and makes it  therapeutic to  nerve  sensitivity i think we now more about it then a neurologist does .  been to the headway preston to show my face and meet others that have problems i went into the talking room for a lecture but i didn't  learn much so said hello to everybody and left with a free bottle lemonade a change is as good as a rest . i have been learning neurology since 2009 the sharpe pain comes from a synaptic responce that sometimes burning and sometimes cold feeling is a reaction of the damaged nerves to the head / point of the impact . but the finger or towel to the neck works very good .i  wish you well all is good here . thanks john.

Hi Neurojohn.

You always sound in good spirits regardless of what's going on. I really enjoy our chats and it's good to know how you are.

I do believe we know more than the neurologists. They are where they are and don't really have to learn anything more, but because we need and want to know what's wrong, we search and investigate and find things out that they have no clue of. I saw one earlier this month and he was an idiot, at least for my purposes. I've suffered migrains from when i was young and from the questions he asked me - toatally unrelated - he concluded that i don't suffer migraines at all. Not to be mean, but i hope he gets one of the "non-migraines" i suffer through and see what he says then.

My research has led me to synaptic as well but they tell me this is not so. I know better, though, as i deal with the problems on a adily basis and sit and read a lot.

I'm glad all is good with you.

Enjoy the lemonade!

Take care

hi alwayalone . hows it going there . were abouts do you live always .are you in the uk? . just to fill you in abit get this went to see neurologist on 4th he said he wasn't a pain specialist ?. it shock me alittle fancy that. so i have to wait longer wich is wrong and donesn't weigh-up .  hope your ok .john

Hi John!

I was actually just thinking of you and went to message you then found your post literally a minute's difference!

How are you?

I hope you're feeling okay and are doing well.

I'm in Australia, although i wish i was in the UK.

The neurolgists here also refer people to a "pain clinic" which does little more than try to get us to take lyrica.

Each time i've been seen by doctors there they tell me i HAVE to take it because that's all they can do and that that's all there is.

I keep telling them i'd rather go on with the pain i have than the pain that poison brings but i guess they never read the notes that i watch each doctor write.

The neurologists used to be some help but things have changed a lot. Different things and parts of the treatments and sorts have now been handed out elsewhere to people (they call themselves doctors) who really seem to have no idea of much at all.

But i don't have to tell you how little they know...

Did the neurologist tell you how long you'll have to wait to see a pain speciallist?

I really hope it's not too long.

It's good to hear from you.

All the best.

Colleen

hi alwaysalone . it shouldn't be to long but it mite be has much as 12 week but i hope not because the longer they leave it the more risk it is to me i am only 50 years old and consider myself to young to die they just like to drag it out which just prolongs pain in the end but there job is to make sure people do not suffer and they can still live a more comfortable live did you ask about gabapentin ? but i know your not a fan like me . it's good to have a chat and try to keep that smile on your face . hey.  thanks john.

Hi John.

I hope they get you in quickly but i know how slow and inconsiderate they are.

They make me wait all the time and it's usually months before i even receive an appointment, then months before the appointment time is actually due.

I hope it's not as bad there as here and that they don't make you wait around.

I've noticed they don't seem to care about people our age, always putting us on hold or giving us the run around; at least that's how it is here.

If you're young or somewhat older than us they'll do what they can to help and make appointments closer and more frequently. We seem to get "lost" and at times even unbelieved (personal experiences) and it's just not right.

As you say, they have a job to do, unfortunately they don't always adhere to what's right or how they should be going about it.

I did ask about gabapentin, i asked a few doctors and only one had heard of it.

Honestly, John, these people we entrust with our health and lives are quite useless - although i can only speak for here.

With all the documented problems and pending law suits for lyrica, most doctors here are still insisting on patients using it. Only one doctor i've spoken to in years has agreed with me regarding the reasons i refuse to take it again.

It's just ridiculous.

I really am amazed at how much more we know about things than the so-called professionals.

It's always good to chat with you and know how how you are.

Hopefully they'll get you an appointment with the pain speciallist very soon and be able to offer you something to help.

Keep in touch.

Take care.

Colleen

hi always just thought i would write to you again in general convo . watched a tv program last night on the gold hunters there you are have you never fancied that they was finding some in the out-back it was interesting some time filler .how are you getting on their . the latest here i still have not recieved any other med it just like there working against it . if there was some way to get over their i would to meet you  but at leased we have some sun shine here at the moment so enjoying it while it lasts at times it's a very wet country i still enjoy getting out on my bike a ride on the coast to get rid of a few cobb-webs always looking for new things to do to better my life in any way . all the best john.

Hi John.

It's good to hear from you.

I'm not surprised you haven't been given another med; they don't seem to know much so i guess they're not too knowledgeable on what meds to try either.

Have you heard anything regardibg the pain doctor?

Things are as good as they get with me. You know how it is with some days better than others.

I watched Wimbledon and saw you guys were having a bit of sunshine over there. It's Winter here and we've hardly had any rain, although the last few days have been raining on and off.

I tend to like the overcast weather. It's easier to keep warm than keep cool. Also i love the rain. It's a soothing sound and quite relaxing.

The weather's changed so much here over the last decade alone and the heat is just way too hot, at least for me. It's also a different type of heat to what we used to get in Summer, and it lasts a lot longer.

Not my kind of weather anymore.

There are a lot of miles between us and i've always liked the idea of travelling to your part of the world but, like you, there's no way to get there.

It's a shame because you tend to have my kind of weather.

So you ride?

Do you ride often?

The only bike i ride is an exercise bike.

There is some nice coastline here. I'm sure you'd enjoy riding along there.

The doctor wants me to have another mri of my neck and spine. I don't really know why and the only answer i could get from her was "i just want to check them".

Not much of an answer when she knows the last one i had gave me a migraine for days and put my neck out for weeks.

They don't care how uncomfortable we are or the pain we end up with so long as they think we're in the correct position. If it was the correct position we wouldn't end up in pain or with joints out of place!

But they never listen and in the end it's not them left to deal with the aftermath. I understand they have to do what they have to do but when it comes to placing people in positions their body doesn't go into they should respect that.

It's always the same, though.

Let me know how you get on with the pain doctor - hopefully you've been given an appointment.

It's always good to chat with you. It helps to get through some days knowing someone else actually understands how i feel.

I don't mean that in a bad way or that i'm glad you suffer as i do. I'm sure you know what i mean...that it's not just all in my head as the doctors seem to think.

Take care.

hi always . i don't say that because your not and not alone . and remember that realy . your an amazing person to get through it and be proud of that . yes i ride a bike good for the health .   the neck  good place to look has you know a support under the neck works to some degree  i still hope to get over their i would love it and a chance to meet you would be very pleasing and would enjoy meeting you . we can only try to make our life's better you has a friend can have my e-mail .write if you want.  ok  and thanks for being a real friend .thanks .john.

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

hi always it looks like they have changed the web site patient . probibly ruling out the private messeges service .  but i still have had no appointment come through from the pain managment dr . i put it in writing to my gp in june or may and after the neurologist appointment i still have had no appointment through  spoke to the practice and they said they would chase it up it's the 7th august just diabolical . i tryed to message you but no joy . but hope your ok and as well has can be .

Hello John.

I was going to ask if you'd heard anything as yet. I can't believe you haven't!.

How are you on the whole? I have good and bad days, seems more bad than good lately.

I sent you my email because i know you sent yours but it was deleted because you can't put it on the forum. You need to go into reply to a message and there's a little envelope there. Clicking on that makes conversations private and you can leave email addresses. If you have trouble, they may help. I just find it easier because this site has a lot of troubles lately.

I'd love for us to meet! Hopefully one day you can get here or me there.

I've been having with pneumonia and got rid of most of it but i think it's back. I've been feeling off and ill. Not nice.

I hope things are much better for you.

I'm finding it hard to stay awake; i think it's my body trying to work off the illness.

I think of you often and always hope the best for you.

You are  lovely person, John, and have helped me a lot.

Thank you. 

Knowing you means a lot and helps me get by. I wait for the day we meet.

Try the private message and hopefully your GP can get you into the pain doctor quicker.

Be well and take care.

I enjoy calling you my friend.

Stay safe.

All the best

x