Introduce Yourself Here.....
Hi standinside and welcome to the forum,
Having gone through a similar experience in the same area, I feel for you. Some people seem to have spinal surgery and make a complete recovery and others end up with chronic pain. I get where you are right now.
We can't offer you a cure here but there are many people who can offer you ideas and support to help you along your way.
Keep us posted as to how you are going and we will hope that you can get some relief in the near future.
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Hi standinside and welcome,
Another who relate to your back problem, I got bony spurs develop after my first back surgery, which forced them to go back in and remove them, unfortunately with backs it doesn't take much to cause more pain, the wrong move to to an involuntary action is enough to cause a world of pain, we all go through the stages until we accept the hand we have been dealt, hopefully we the right meds and physio pain becomes under control again.
Apart from CRPS, TMJ & Migraines we also have horses in common. I used to love to ride & unfortunately up until last year could still be around my Mare, Skye even though I could not ride her. Sadly I had to have her put to sleep. But I loved the smell of her and just being near her: -was very therapeutic. I managed not to have too many tumbles or not serious anyway. BUT, I sure do miss her and just last week had to make the big decision to part with all of my horse gear. (Kept a few keepsakes)
Really glad to be part of this forum, can discuss issues with people that understand pain. Great to chat with you and look forward to continuing to do so.
Hi everyone, my name is Jasmine and I'm 20 years old. Earlier this week, I was diagnosed with Fibromyalgia after suffering for 9 years with constant pain, stiffness, headaches, exhaustion, and all the rest of that fun stuff.
I don't really know why I'm here, I suppose I was just hoping to meet other people in a similar position who hopefully understand I'm going through.
Right now, I mostly just feel lost. Until my diagnosis, there was a chance that the problem was something else, which meant there was a chance I could be fixed and live pain free (yeah right!). Now I am trying to come to terms with the fact that I will probably never live without pain and I'm trying to figure out - what's the point? I feel absolutely miserable knowing that this is it. This is all there is from now on, and it's shit. I haven't been able to live my life yet, and now I feel like it's already over. I feel like I have missed out on so much.
I really don't know where to go from here. I guess I'm just sitting here going, "Now what?". I'm not coping well. In fact I'm not coping at all.
I came here with so many things to say and so many questions to ask, and now that I have finally made an account, I can't get it all out. I'm so frustrated and angry and disappointed and sad. I thought that finally getting a diagnosis after all these years would change my life, but it hasn't and it won't.
I don't really know where I was going with this post. I only intended on a very basic introduction and then all the rest just came pouring out. I might come back later when I finally have my head together and can have a more objective and constructive conversation.
Thanks and sorry for the word vomit,
Hi Jasmine ,
I believe by joining us you have made the first tiny step , the people who are on here are suffering like you and we can feel your angst.
Flip through the site and see if there is some aids that can assist you .
Some of the longer sufferers of this curse have a great deal of help that they will pass on to you so do not fear we hear you .
A few of us including me are new to pain and as you say I've missed so much as you think your life is over it isn't you are still young ok you are in pain but as long as you are here that's what matters , you are young with people who care about you including all of us now so don't think you are alone in the big fight .
as long as I wake up alive I'm happy Because it could be worse
Hi Jasmine and welcome,
Firstly don't apologise for expressing how you feel, this is one place where you can let those feelings and thoughts out, it is a place where you will not be judged, because what you are going through, just about every chronic pain sufferer is going through or has been through the same experience, so you are not alone.
It is a lot to take in when you finally get that diagnoses that they can't cure you, but be assured life doesn't stop, and chronic pain doesn't have to stop you enjoying life, most will tell you getting the right support team makes dealing with pain a lot easier, and that means a good multidisciplinary approach, this is where pain clinics are the best option, all areas are covered and are under the one roof, a pain management course is also a good idea, they will teach the tools to help manage chronic pain.
Read through the threads, as people have different ideas and coping mechanisms, which may help, also look through the main topics and the top of the page,there is some very useful information that will be very handy.
Above all keep in touch, talking to others helps and stops one bottling it all up, even if it is just a vent, there is a thread dedicated for that purpose.
Hi Jasmine, Welcome!
You have come to the right place. Sure we don't find all the answers right away. You are young and that is the advantage you have. If you use it right, you too will have a life.
I was 47 when I got injured. As my medical condition deteriorated, I too asked myself all the very question you have just done. I believe many who come to this Forum looking for some answers,often have asked themselves the same. When the injury I sustained was not treated in a timely manner, and much precious time-frame was passing by, my anger ruled supreme in me. I ended-up with untreated, unhealed slip discs in my Cervical Spin, Lumbar Spine, wrist, shoulders etc and the trauma led to Chronic Neuropathic and Musculoskeletal Pain, Fibromyalgia, Chronic Fatigue Syndrome.
I consider myself blessed, when I had the chance to attend Pain Clinic, where correct medication and the correct dosage etc was worked out. Learning about PACING and having the RIGHT ATTITUDE was the best lesson I took away with me. I saw the light for the first time, when by chance, came to hear about Chronic Pain Australia and Australia Pain Management Association Links etc. These websites provided the information doctors had no time to sit and explain. Then came a book that opened-up a whole new dimension, to the world of hope.
Jasmine I am 63 now. My wheelchair sits in my garage. Over the years, the distance I walk has increased. Bad days continue to dot my life. No worries!!. Standing in a place too long is not possible - No worries. To remain outside in the cold winter without being prepared with the right warm cloths can turn out to be a nightmare- no worries. These are now considered little obstacle I had refused to remain, where life had taken me and held me captive. I decided to act on what the Pain Clinic taught me. That is to have the RIGHT ATTITUDE, to turn our life around. Very slowly the great importance of that message on attitude began to sink into me and I decided to take matters into my own hands. I am the master of my own life. I am going to do all that I possibly can to grab what ever I can of life. I am painkillers to help me function on day to day basis. The functions have increased, and that is good. I am back doing some of the thing I loved doing.
I would very much like to recommend this Book. This book contributed to my turnaround story. The book is entitled, THE BRAIN THAT CHANGES ITSELF by Norman Doidge. I hope this book does for you what it has done for many. Good Luck. God Bless.
You posted in exactly the right place!
Ah Fibromyalgia. Yep, know that one well, considering I have suffered it pretty much my whole 57 year existence. Jasmine, I am proof that you can live with this thing and indeed you can get yourself to a place that will allow you a certain degree of normal living, providing you obey certain rules. These rules you will need to make up yourself, after you have educated yourself on your condition, but mostly what your body tells you.
That is what I had to do.
What I am saying is, you need to go through some steps to achieve this.
First of all, do yourself the biggest favour you could ever do. ACCEPT this condition and get over it!
The sooner you do, the better off you will be. You see, while we are haggling with ourselves and agonising over our lost good health and fighting to get a cure, we load ourselves up with a huge amount of stress which only serves to do one thing and that is to feed into the Fibro. Once you do that, your pain levels will go through the roof and stay there!
However, if you are able to just take stock of where you are, do the numbers so that you know you are not going to die tomorrow, cos it ain't gonna kill you, then shrug your shoulders and just ...........well, get over it!
Once you get that Monkey off of your back, you will have a much better outlook on life, plus you will be more open to new techniques and therapies that will help you self manage your condition.
Yes, I said "self-manage!"
Have you been to a Multi-disciplinary Pain Clinic yet?
If not, go to your GP and ask for a referral to one and go there with an open mind to learn how to self manage your condition. Don't go there looking for a cure, because there is none!
Once you are taught how to self manage your condition and you have had your physical health increased after they teach you exercises you can do, you will find your pain levels dropping and your mobility will increase. Many people who suffer Fibro, still work to some degree and lead relatively normal or mostly normal lives.
Some end up broken because the burden is too great. That's where I am.
I got my first whiplash injuries when I was just a child aged 3, in a motor vehicle accident. The fibro symptoms started a few years after that.
Then in 1985 a fully loaded metro bus that had no brakes, used me to stop while I was stationery at the traffic lights waiting for them to change. After adding to my childhood spinal issues, I also received some other spinal injuries that were a little more nasty.
Now they are all healed of course, but scar tissue seems to linger on and it has a tendency to affect our nerves, plus discs and joints tend to erode and fuse, which is what my lumbar joints are doing. I won't have an operation, but they are fusing which brings about restrictions, but it is more comfortable to me than people I know who have had surgery to have joints fused. My neck is a mess, which causes me a lot of pain. I get lots of migraine type headaches, which can cause me to remain locked up in prison for a day or three.
Anyway, the multi disciplinary pain clinic I went to helped put a lot of things into perspective for me. I taught myself over the years of my life to obey certain rules, but didn't know why. When I went to the pain clinic, the penny dropped and I knew what I had to do to keep going.
Well, I haven't worked since 2002, but prior to that, I was a work a holic. Idiot!
I was also fighting a losing battle, knowing full well that I am going to end up on a disability pension at some point.
So now I do what I can to distract myself.
I volunteer for this organisation. I am also a member of our local Men's Shed. You can do this too (well, maybe not the Men's Shed). You can find some organisation you would like to volunteer in that helps other people out. Talk about great pain relief and self satisfaction!
You will be amazed at how much pain YOU DON'T SUFFER, when you are making someone else's life just a little better, even if for only a few minutes. The feelings are great and are also the best pain killer you will ever experience, plus without harmful side effects.
Whatever you do try to do, only do what you can in small baby steps to start with, but slowly build yourself up. And do it SLOWLY!
Fibro has a way of seriously punishing you if you break the rules.
I know when I have over done it. Not only do all my muscles, joints and bones hurt, I feel all my organs inside aching and I get all these really bad/weird symptoms turn up. I can get bad rashes, diarrhoea for no good reason, very strong nausea that lasts for a couple of days, my hearing can go on the blink, plus my eye sight is disturbed, not to mention that I just don't sleep. And my skin. Sheesh, it often hurts like hell, is on fire, or gets dry and scaly for no reason. Damn, I'm a broken down old fart!
But then one day, it all goes away. Well, not the pain. It hangs around like a bad fart!
They tell you if you do the exercise you'll sleep better. yeah right. If I break that rule and do a little too much, I will not sleep at all.
Also, I lie down each afternoon in bed, with the room dark and my head under a pillow, so that I can lock out the world. I virtually never sleep at all during the day, but it's my way of trying to turn the noise off inside my head. And believe me, I sleep better if I do this. If I miss this afternoon lie down, I don't sleep very well at all.
This is my form of meditation, which you need to learn to do, but find out what suits you. You might want to sit in the corner with headphones on listening to your fav music and just chill for an hour. Whatever rocks your boat, but make sure you do it and do it very often or obey the rules that you establish.
Now I know you are young and haven't had a lot of time like me, but when I was your age, I committed myself to studying ......ME! I started taking notice of everything that was going on. What made me crook or worse and what I could achieve that never bothered me at all. Then I experimented until I found the happy medium and knew that I had control over my activities, plus 'some' control over my pain cycles and flare ups.
This became my rules and I obeyed from that day on. I know I can tweak them every now and then, but not change them.
You can do this too.
Oh and a word of warning. Bloody hormones can cause you to have flare ups. I'm a bloke, but I can tell you that at your age my highs and lows(pain wise I mean) changed dramatically due to hormone fluctuations. And knowing how hormonal you females are, I can bet there's a chance you 'might' be affected too. If not, then great!
lf you notice it happening during your changes, then you can just chalk it down to one of the reasons you get worse, and don't get anxious about it, just.......get over it. Just establish a rule to suit that time and obey it!
Seriously! The sooner you accept and get over the emotional stuff with this shit of a condition, the sooner you will be much happier and more able to do many things you thought you were not going to do anymore.
And don't be hard on yourself if you have a whole week where everything has turned to crap. Just go with it. Rest up, drink lots of water, do a little gentle exercise and read, read, read all you can find about your condition on the internet.
Take the pressure off of yourself Jasmine and accept this condition, but keep talking to us and let us know how you are getting on.
EDIT: I forgot to add. Please remember that depression is always, ALWAYS knocking at your door. So try to find a good clinical psych who has studied chronic pain and get them to help you get through the tough times. And if you start getting any thoughts in your head about giving up and wanting to die, then go see your GP immediately and get treated.
I can tell you that just about every person on this forum has wanted to just give up and die hundreds of times throughout their pain journey. So don't be ashamed and don't get too stressed over it. Just recognise that it is a dangerous symptom of your pain and you MUST get it treated IMMEDIATELY!!!!!
We often have regrets and wish we were not here, which is probably not depression. But if you find you are having very dark thoughts about this and it dogs you, then you need help immediately. So learn to recognise this and act accordingly if or when it happens.
We don't know the figures, but there is a chance that successful suicide in chronic pain sufferers, may be more significant than we know.
So don't delay if you feel you are in that category!
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
When I read your post, I just wanted to give you a big hug! I have a 13 year old daughter and to think you have been dealing with pain since that age, wow. You are probably a lot stronger than most people your age simply as a result of what you have been through so far. Peter had so much good advice for you. I have not attended a multidisciplinary pain clinic yet, but have done an online course in managing my pain and it helped so much in accepting my situation and reducing the stress. It was interesting that Peter mentioned hormones because my pain is definitely affected by my cycle. I've had a big flare-up in the past week, right on schedule. If you expect it and recognise it, then you know it will pass and this makes it so much easier to handle. I still get upset and angry sometimes but despite the bad days, I have learned to live with my condition. You have youth on your side; now that you have your diagnosis, move on to actively managing your condition and you will be surprised by how much this can help. Best wishes, Linda
Cyber hugs attached
as long as I wake up alive I'm happy Because it could be worse
Hi Jasmine. Lots of good advice from others already, so I won't add anything except another hug from cyberspace.
Yes there isnt quite anything as special as the smell of a horse, the soft velvet feel of their noses and their bodies up against you. I was very naughty on the weekend while I was with my hubby checking his horse, I hopped in with them and got my dose of horse attention. I really miss that contact. I am meant to only look as my neck cant cope with more damage but sometimes the soul needs looking after too.
There is always a SMILE
in your day,
you just need to find it!
This place makes the sometimes dark and lonely world of pain not so scary. I hope you find support, information and maybe some laughs here.
I too started my pain journey young having had my first injury when i was 16. I was able to get past the pain from it after lots of bumps (the biggest being finding people to believe me) along the way but I got there. It wasnt till I added a few more injuries that it got harder to handle but there is always a life with pain it just might be different to what we planned.
I hope that you can find some smiles in your days to help you get through each day.
There is always a SMILE
in your day,
you just need to find it!
Hi all, I posted a few weeks ago saying I had just been diagnosed with fibromyalgia and had my pain clinic appointment coming up. Well I went to my appt only to be told that the Rheumetologist was wrong and I don't have it. The pain dr said that some rheumy's use fibro when they can't find another reason. So I now have to see another Rheumetologist for a 2nd opinion. It took me 8 months to get to see the first one, and now I can't get into the new one till November. In the meantime he is changing my pain meds, which I am in the process of coming off OxyContin and changing to Palexia. I'm struggling so much each day physically and emotionally. its taking so long, between specialist appointments, even with my gp calling to try and fast track. I've made an appt today with a psychologist, couldn't get in for 3 weeks, feel like no one is taking this serious. I'm running out of energy and can't seem to see any light at the end of the tunnel. I don't have any family support,(I have a 16 year old son with Aspergers and he is adding extra stress). My fiancé is the only person who is trying to understand.
My house is a mess which I hate, I'm renting and the owners have just decided to sell. Add that to the stress list. I'm just feeling so down every day, even my beautiful garden isn't cheering me up anymore.
How do I get myself out of this headspace!??
How terribly disappointing for you, Michelle. Those delays are enough to drive anyone crazy, not to mention swapping painkillers. But hang in there. Remember that none of this is your fault in any way. Your GP and fiancé sound like they are doing what they can, but it can be a terrible grind. The psychologist will hopefully be another ally when you get there. Everything you are going through is hard enough as it is without the added stress of the house being for sale. Just try to take everything one step at a time.
Cyber - hug.