Hi. I am so over all of this with my condition so just needed to get it out somehow.
I was diagnosed with depression when I was 13. I had regular episodes of anxiety and then seizures. That got diagnosed with Epilepsy at 14yrs. I got more depressed because I was bullied and started failing at school. So I went on mood stabilisers/anti convulsant meds.
I had 5 seizures in total so very hard to determine the cause. They said they don't know therefore said I had generalised primary epilepsy.
At 15 yrs I was diagnosed with scoliosis after increasing periods of back pain and leg/tail bone numbness. I was too old for treatments other than stretches. I struggled to do these regularly. Had tight hamstrings from the compensation of my curvature however the curve is considered as mild. Despite this I have been in pain since then.
I had to stop playing hockey as a result of my back pain just as I left school. Still no treatment other than acceptance and self management with stretches. Depression around feeling broken persisted. My last seizure I ever had was at 18yrs which was a relief but could come off the meds without ceasing driving for 6 mths (which I couldn't afford to do with my job and uni).
I had a traumatic relationship at 22/23 yrs. I was diagnosed with PTSD and was put on anti depressants, whilst still taking my anti convulsant (which I had now been taking for 7 yrs).
After this, my back pain became more constant. My panic attacks and self harm started. And my anxiety and depression in general was put of control. Again counselling and stretching with the increase of doses for what I was on was all doctors could do for me.
At 26yrs I tried to get off the anti convulsant I had been on for epilepsy as I was in between jobs and the doctor said it would be safe to do so given I had had no more seizures for a significant time.
At 27-29yrs i had another traumatic relationship, this one was more emotionally abusive in nature. I attempted suicide when a doctor put me on an anti psychotic to try and control my panic attacks. I quickly went off this after 3 months and suicidal behaviours ceased, however the original self harm coping method remained.
At 28yrs I had a periods where I was stuck in bed due to severe back pain radiating around my ribs and down my upper legs and hips. My shoulder stiffness was consistently giving me regular migraines and numbness in my arm with pins and needles down to my fingers. I was feeling pretty hopeless at this point.
After lots of counselling and reintroduction of a different anti convulsant and anti inflammatories and muscle relaxants I was self managing a bit better for the first time in my life.
Anxiety and panic attacks increased at 30yrs after the end of my emotionally abusive relationship.
Now in a new relationship that is healthy. My back pain and anxiety is now the last thing I need to have sorted. I had MRIs and xrays to see if there was anything nasty causing all my pain. I also had an EEG to check whether i had any epileptic activity that may have been contributing to my anxiety and reduced ability to stabilise my mood. Also had blood tests run to check on all vitamin levels and to check for inflammatory diseases. All results were normal.
I'm over having everyone telling me it's all normal. I am sick of having nothing I can do about it. I don't want to be a pill junkie or get used to any meds to the point that they stop working so I don't take them as often as I should. I'm highly anxious with an ex-friend situation which has increased my pain and self harm/panic attack occurrences.
I'm worried about my health a the time now. I'm struggling to maintain a content and relaxed state if mind for longer than a few days. My physio, chiro, osteopath and pain specialist say they can't help me any more than a day's relief from the pain. I'm left with valium and my mood stabiliser as my medications, with paracetamol and ibufrofen. I get irritable bowel from the waves of constipation and loose bowel activity from the medication. I get emotionally paralysed twice a day over small stresses. I self harm twice a week to overwhelm the emotional pain. I get increased back pain after each anxiety episode and vice versa.
Diagnoses that I have had suggested include fibromyalgia, anxiety disorder, mood stabilisation disorder, depressive disorder, chronic pain disorder, multiple causes of pain (that are still unknown) one of which is my scoliosis.
I'm stuck in a cycle and feeling lost. So over it all.
I'm so sorry about all that has happened to you over the years but know this, our forum offers support and friendship.
We can't take your pain away but we can show empathy, as we all know how it feels to live with pain and the consequences of it.
This may seem like a stupid question but do you have a psychiatrist or psychologist looking after you? You mentioned physio, osteo, chiro and pain specialist which will all assist with the physical side of things but you don't mention any help with your mental health? Chronic Pain leads most of us to having mental health issues but having the support is as important as the physical side (if not more important I personally believe) If you don't have this help then ask your GP to refer you to one or to a Chronic Pain Clinic where a multi disciplinary group of professionals can help you. If you do have a psychiatrist or psychologist make sure you visit them regularly to assist with your mental health issues.
Also don't forget that if you are desperate at any time please contact LIFELINE 13 11 14
We are here for you and wish you luck with getting some help. Please see your GP to get some referrals.
"Just thinkin' about tomorrow
Clears away the cobwebs and the sorrow 'til there's none
When I'm stuck with a day that's grey and lonely
I just stick out my chin and grin and say, oh
The sun will come out tomorrow
So you gotta hang on
'til tomorrow, come what may!"
Thanks Jo. I'm currently seeing a clinical psych fortnightly for my mental health but I haven't found it too helpful for dealing with my chronic pain. However I'll definitely look into other specialist psychologists. I do have a psychiatrist but he said he only has to see me if I'm looking to change my dosage.
Where I live, it's hard to find a good doctor. But I'm hoping to eventually find a reliable and competent GP. I think a big problem has been a lack of a good GP over the years for me.
Hopefully I'll persist. Appreciate the empathy and kind words. Really do. I haven't really centre about both these issues before, or even thought to treat them together, so thanks.
You live in or near a fairly major city so you should have access to a multi disciplanery pain clinic possibly , tal?k to your GP as North Mackay private has three of the top pain specialists there ,you could also enquire at the public hospital for a pain course it ain't gonna fix it it only helps you to cope better with it .
PACING this word is crucial when you have chronic pain I'm one of the luckier ones they know where my pain coming from as my lumbar is slowly collapsing so there isn't much fun to look forward to in my life except grand children they keep me focused 3 grand daughters so far ,four sons should give my wife and a handful for our latter years .
The black dog is a bastard that nips our heels every now and then just remember you have family who cares for you and it would cause so much heart ache to them as they have to struggle to understand where they had failed so please listen to Jo. if you need to talk call the number on her post or message us if you go to venting we'll see it as invariably one of us is always watching for the crack slippers so let me give you a light?
I have a wonderful psychologist who listens and doesn't try to slip cognitive and non cognitive stuff at me she listens and helps without the bull ? So if you are baffled by bull search for a listener .
Keep in touch
as long as I wake up alive I'm happy
Because it could be worse
Thanks Johnno. Really appreciate the kind words from yourself and Jo.
I've just been diagnosed with borderline personality disorder as of last week. The psychologists think I've had it since I was 10 or so. So I have booked in to see a psychiatrist this coming week to sort out medications.
My GP is ok. They're usually not that knowledgeable with complicated pain cases as I'm sure all are frustrated with. But mine has put me on Clofen to help with the inflammation. Unfortunately this is a drowsy medication too (as I'm taking valium during rough spasms only) so we'll just have to see how driving the 40min to work goes...
I have seen one of the top pain specialists in Perth and he has thought Fibromyalgia and my scoliosis with some inflammatory issue going on. But basically after all the scans said that I haven't has anything nasty happen yet (like your lumbar area) and that he can't do much more for me. Basically I have to wait til I get a bulge disc or collapsing lumber area or some muscle atrophy before I can be helped...
Going day by day. This new diagnosis has thrown a spanner in the works (and yes I do have those horrible counsellors that do CBT on me - which doesn't work for BPD, although to their credit they do try).
I'm going to ask my psychiatrist this week to investigate medications for chronic pain plus anti-depressant, apparently they may be good for me if I do have Chronic Pain Disorder.
Trial and error. Thanks for support. I hope your lumbar stuff gets sorted, and I really admire the attitude you have set yourself. It is inspiring.