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Severe Pain Disbelieved By Doctors For 30 years - Possible Fibromyalgia

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3 weeks 5 days ago - 3 weeks 5 days ago #28807 by Alyndrya
Alyndrya created the topic: Severe Pain Disbelieved By Doctors For 30 years - Possible Fibromyalgia
Hi,

I’m sorry, this is quite a long one. I’ve been having so much pain and I really wanted to get this off of my chest and talk to people in the same boat as me. I have a pretty long history of pain. I did post about a year and a half ago here, about having really severe pain for all of my life, but things have since become worse.

I’ve been waiting for at least a year and a half to see a Rhumatologist at the Canberra Hospital and due to my previous doctor’s negligence, I was put on a very long waiting list and considered not critical. I had a bad car accident and got whiplash down my neck and spine. It’s been about 2 years since I was injured. My previous doctor became tired of seeing me after several months after my accident and I didn’t heal and her behaviour changed to outright rudeness and accusing me of being a drug addict because I couldn’t come off of the Oxycodone. The thing is, I told her that I’ve had ongoing pain in the neck and back for years and years and although I got into a car accident (Which worsened my pain in those areas) the Oxycodone gave me relief from downright agonizing pain that I’ve had in my entire body for most of my life. I’d say at least 30 years. I just turned 41 this month.

Now for the negligent part and no offense to any doctors on here, but some in your profession have been in practice for so long that they no longer have any empathy for their patients.

After extensive research and talking to former friends on the internet who have had almost identical pain and have Fibromyalgia, I’m pretty sure that I have it too. I suggested this to my doctor and she very reluctantly wrote me a referral for a Rheumatologist. The referral was only a paragraph and was full of spelling errors (Which show her reticence) she basically said that she’d run some tests on me (which she lied about, she didn’t touch me at all) and that she’d also done a blood test to rule out something that shows up in Fibromyalgia (Also a lie), and she put nothing about my severe pain at all, so that when her receptionist sent the referral through to Canberra Hospital I received a letter back saying that I considered as non-critical and was on the end of a very long waiting list for the public system.

Since I was a teeenager or maybe even a kid, I’ve had very severe pain all over my body. I was home a lot in High School due to this pain. I also spent a lot of my time in bed. I used to come home in the afternoon and go right to bed. This has actually not changed right up until now. I would usually come home from work and right to bed, or I’d be no good for the next day. I actually stopped going into the sun because it hurt too much on my skin. Certain clothing textures really hurt. I don’t like to be touched either because it hurts. Baring having to go to work or appointment and being in the sun that way, I don’t go into it at ALL. Not only is it bad for my migraines, but sun hurts too much. Sometimes my legs or hands go numb. I’m always exhausted. Ive had very bad depression since I was a teenager. I’ve always felt as if I’ve been punched and kicked over my whole body and I’m bruised everywhere. Actual bruises started to show up on my arms and legs every 2-3 months about 4 years ago now and some is because I do fall or bash my limbs on a desk or something else, because I’ve become even more clumsy than I used to be and I get confused a lot, but the rest of the bruises just seem to appear. I could show your really shocking photos. The worst pain I’ve had since this all began long ago, has been at my neck on either side of the spine, also in the shoulders just below, where the head meets the spine, near the shoulder blades, base of back on either side near the tailbone, in my buttocks, and my legs near the knees. It’s very difficult to describe my pain. It’s like my muscles are being squeezed constantly, and sometimes it feels like a band about my limb, but the also stabbing and sometimes burning and hypersensitivity.

I suffer from absolutely dreadful cramps all down my legs, even into the feet, which has just become far more severe over the last few years to the point where I’m in constant agony and my legs are getting weaker and more difficult to walk on. I’ve had extremely severe, daily migraines since I was 12 years old. They have also become far worse over the last few years. I feel weak all the time, like I’ve gone through the worst bout of flu ever. The older I get, the worse the pain is becoming. I’ve also had really bad bouts of diarrhea since I was a teenager and stress makes it worse.

Because I was diagnosed with Endometriosis in 2009 (Finally, after 20 years of telling my male doctors about the gruesome periods I had for 25 days of each month and complete agony in my stomach, only to be told that it was just gastro or a virus) so all of my limb pain has somehow been put down to that condition. The thing is that Endometriosis doesn’t come with those sorts of symptoms. Even when the Endo was cut out of me, my symptoms persisted. Doctors have on and off, treated either my migraines or my Endometriosis but neither at the same time. Anything else I’ve been going through was put down to those conditions and when I’ve mentioned bad neck pain or cramps it has been ignored. I’ve had pain consistently in my back and neck for years and years but unfortunately whatever has been wrong with me for so long had made my body very weak and sick, so I have had back and neck injuries from lifting things.

I’ve been to the hospital, so many times in severe pain, only for the doctors to take a simple urine and blood test. The minute they heard about me having Endometriosis they’ve mentally checked out and assumed that was what was causing pain all over the body. Clearly, most doctors don’t know what symptoms come with Endo. After those two tests I was always sent home. They’d sometimes give me Endone or morphine but they didn’t work because I have a big tolerance for painkillers and especially Oxycodone. And once again, I’m thought a painkiller addict trying to get higher doses of painkillers. It’s just that my pain is always so high that lower dosages painkillers is like taking Panadol. I can’t tell them my true pain score, because if I tell them I am at a 9/10 I’m instantly disbelieved. Also, Oxycodone, unless it’s in a really high dose and it relaxes the pain at my neck and back, does not work on migraines. It does on my other pain though. I’ve been to many Nurologists for the migraines but they’ve never found out what’s causing them. It’s usually on the right side, and my left side ones usually came only 2-3 times a year. But for last few years the left side ones have been coming about 12 times a year and last several days before switching back to only the right. I often now have migraines on both side, though they too used to be rare. My head just screams at me with agony. I will lose feeling on one cheek and lose sight in one or both eyes. The neck pain with the migraines is constant. I can’t even recall when I didn’t have pain at my neck on either side and at the base of my skull.

Now, I know that my car accident hurt me in the same areas that I happen to have had pain in for 30 years, but I don’t think that I have whiplash anymore. I think it’s Fibromyalgia and having whiplash in those areas have made it all far worse. But when I’ve brought it up with my new doctor and the Pain Clinic I’ve been seeing here in Canberra, I am immediately shut down. They don’t want to hear it. So I’m currently stuck in agonizing pain because both of those doctors think it’s the injury. It’s not, or there’s just a little left enough to flare my usual agony up even higher.

Due to the accident I have Major Depression, PTSD and Agoraphobia. The pain is so bad that I spend 23 hours a day in bed. Some of that is depression, but the rest is pain. I have been locked up in my apartment for the last 9 months. I’ve only hand a handful of medical appointments which I have to go to. I know that so much bed time is bad, but I’ve always been that way due to the pain and weakness. I keep getting knocked back for Disability with Centrelink, so I have a lot of stress in my life and I will soon have to find a job again, despite all of my pain. I know that I’ll lose that job almost immediately. I’ve lost more jobs than I can even list here over the pain and weakness I’ve been experiencing for the last 30 years. It’s always because my muscles and joints are screaming at me in agony and I can’t even move. Other times, it’s the severe migraine, or I just feel so overwhelmingly weak all over, that I can’t get up or even stay awake. Even though some of those employers knew that I had Endometriosis their tolerance to my absences wears thin very swiftly and my contracts aren’t extended once they’re up. I’ve been fired 5 times for being in too much pain to fulfill my job duties. I most recently was fired due to my whiplash.

The Pain Clinic has cut my Oxycodone down a few weeks ago (After I was put into Calvary to have Ketamine infusions for my migraines. It didn’t work) and I’ve since been in complete hell. My doctor there doesn’t even listen to me when I try and explain how much pain I’m experiencing all over my body and she sees it as lies on my part to get more Oxycodone. She also thinks I’m a drug addict. Due to my GP making a mistake and thinking that I’d been given a script for 300 more Oxycodone that I had actually received, she also thinks that I’m a drug addict.

Yes, I would like painkillers to take away this absolute agony all over my body, but it doesn’t have to be Oxycodone. I would welcome ANYTHING to take my pain away. I am on Gabapentine, Endone, Panadol, Propranalol, Endep and Melatonin but I feel like I’m on nothing for my pain at all. When the pain gets really severe, all I can do is curl into a ball. I wish that I was dead when that happens. Unfortunately, the severest pain happens every day. I get constant flare ups that take me to 10/10 pain. Usually, my pain score at any given time of the day or night, is 8/10.

My whole body, the entire thing, is in agony 24/7. I go 6-7 days with no sleep at all due to it. I am in my own personal hell and none of my medical people are paying attention or even want to listen and help me. I just don’t know what to do anymore and if I’m completely honest, the agony is taking a massive toll on me psychologically and physically. I’m getting worse every month with the pain. I no longer have short periods of lower pain levels, although it did sometimes drop to a 7/10 when I was taking higher dosages of Oxycodone. Most days I wish that I was dead and I’m in no way exaggerating. I cry a lot and can’t eat I don’t have any family or friends left to help me because they all got sick of hearing about my problems. I can’t do the dishes or cooking and my place is always a mess. I can barely care for myself, let alone cats.

I feel that I’ll never get the proper treatment that I need because of a long history of pain and the need for painkillers. That’s all the doctors really see when thru look at your medical history, even though I forced myself to go years at a time without pain relief. Codeine isn’t available over the counter anymore and that was my go to pain relief. I’ve tried healthy diets and exercising but movement and working on my muscles makes the pain far worse. I’d really like to see a Rheumatologist as soon as possible but I believe that the only one available in Canberra has to go through the hospital. I...don’t know what to do anymore, but I can’t take much more of this pain. It’s breaking me down completely. I don’t want to be this way anymore. Please, can someone help me?
Last Edit: 3 weeks 5 days ago by Alyndrya.

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3 weeks 5 days ago #28808 by Johnno
Johnno replied the topic: Severe Pain Disbelieved By Doctors For 30 years - Possible Fibromyalgia
Hi Alyndrya,

Wow!
Firstly welcome and I sincerely hope we will be able to offer some support, I also take alphabet medications so I know what it’s like if you are taken off opioids and you need that extra oomph to ease the pain.

I have a great pain physician who burns nerves nuerotomy in my back every few months which gives me a period of reduced pain she also recommended I reduce and/or remove opioids and use a pan.... osteo which is slow release medication and it does help.

If you get back to the home page there is a letter for those who suffer chronic pain if you print this out and give it those who doubt you it could help I asked my GP to read it and he now understands and we work together to try to control the amount of pain I am in on a daily.base he also has referred me to a nuerosurgeon and if you have private health cover they can work amazing things .

Unfortunately Chronic pain ,PTSD, depression and being constantly in a state of being down is a symptom that only you and or a great psychologist can pull yourself out of the mood but if you can get one person to read the Chronic pain sheet you will not be on your own.

When I found this letter on this site I had to share it .
Good luck and stay with us

Johnno

as long as I wake up alive I'm happy
Because it could be worse

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3 weeks 5 days ago - 3 weeks 5 days ago #28816 by Alyndrya
Alyndrya replied the topic: Severe Pain Disbelieved By Doctors For 30 years - Possible Fibromyalgia
Hi Johnno!

Thank you very much for replying. As I don’t have my parents support and I’ve lost all of my friends over it, I’d welcome talking about things with others who are suffering from chronic pain. I don’t feel as if I’m getting the right medical help. The Pain Clinic and my GP and Psychologist are all focusing solely on my accident of two years ago and the migraines. They’re just not listening to me when I tell them that I’ve had long-term pain and seem to think that the migraines are from the accident, as is my neck and back pain. I know that the accident exacerbated that, but it wasn’t the original cause.

I’ll check out the letter and give it to my GP but I’m not sure how much it will help. She does know everything wrong with me but unfortunately she’s becoming as sick of my issues as my previous doctor. She’s already suggested getting another doctor. As I have a long history of doctors who can’t deal with my pain or understand it, things look like I’m doctor hopping. She knows that I’m Agoraphobic but was making me travel into the city on my own and around dozens of people and with a taxi driver I don’t know. It sends me into huge panic attacks. I just ran out of pain relief tonight and because I only had a week’s worth and it’s a public holiday, I won’t have a thing for the pain until tomorrow night when my chemist delivers to me. I’m going to be so much pain. She also won’t give me a months worth like before, because of her mistake with the script previously.

Now that the dosage of painkillers has been reduced so much (From 50MG Of Oxy a day as well as 60MG of Targin, down to 15MG Of Endone) all of the pain from my Endometriosis has come rushing back, as well as bad pain in my kidney that’s shrunken. I can also feel that an Ovarian Cyst has gone back again. A previous Neurologist from years back had me Digesic, which is one of the only painkillers that every took my migraines way down and let me work, but it got banned I think.

I just can’t handle the pain anymore. It’s become so much worse and I’m just not getting through to the Pain Clinic, Neurologist or my GP. In the past, either my neck and back pain was treated and they didn’t treat the migraines, or they treated the migraines but not the back and neck pain. I’ve tried dozens of medications over the years for my migraines. I was given Topamax and half of my hair fell out because Dr Andrews kept me on it for a year and a half. I’ve tried Botox too and now Ketamine.

I just want a normal life where my pain doesn’t rule my entire world, because any sign of great pain and leave from my job gets me fired, no matter how much my boss said he understood. I don’t know what normal feels like anymore. I’ve been in pain for 30 years, every day. It’s far, far worse than it had been previously.

What did you mean about the nerves burned neurotomy? I’ve never heard of that before. It sounds really painful.

I have a Psychiatrist who sees me every 3 months but they’re basically putting me on anxiety pills, which I’ve told them repeatedly aren’t working and they won’t try something else. I had a Psychologist every week about a year ago, but once I became unable to leave my home due to the Agoraphobia he dumped me. He no longer took my calls or answered emails. His receptionist informed me that it was illegal to talk over the phone for an appointment and that if I couldn’t come in then I couldn’t get anymore help. The Psychologist had told me this previously too. Once I could no longer talk to him, things got far worse and I could no longer leave my home. I also considered that he’d abandoned me like everyone else in my life. I don’t trust anyone now.

This is my original post from a year and a half ago that explains my history better. I’m not sure it says that someone else posted it and that my profile pic and my cat: chronicpainaustralia.org.au/forum/my-ill...ost-of-my-life#26803

Thank you for your help.

Alyndrya
Last Edit: 3 weeks 5 days ago by Alyndrya.

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3 weeks 2 days ago #28834 by pamcarr
pamcarr replied the topic: Severe Pain Disbelieved By Doctors For 30 years - Possible Fibromyalgia
hi Alyndrya, welcome here, you are certainly doing things tough, I would suggest along with the letters about Chronic pain, found on this site, I would suggest printing the letter you posted here.. get the doctors to read it and see if it helps, it might give them a bigger picture rather than focusing on one condition, a Rheumatologist is a good start, as is the suggestion of a Neurosurgeon - which is different to the Neurologist - do you have private health insurance? this may allow you to go to a private pain clinic rather than the public hospital clinic... the nerve burning is done under either sedation or anaesthetic, zo you don't feel it, I have had this done, and found it to be helpful, but I only had a few weeks relief which was great, but not so when it came back ...

nothing that any specialist, pain clinic or treatment will fix the chronic pain quickly, and often you might have to have a few things going at same time - psychologist -counselling with pain clinic and gp - need everybody to work together with you

it is awful being accused of drug addiction, I think everybody here has had that happen at some time or another and I do hope that you can get something sorted out

have your ever been referred to support service, and you can have a case worker, maybe they can help you to attend your psychologist appts, help with managing your home and housework issues and help you with other stuff - not sure what is available in Canberra

Centrelink - I'm having exactly same issue, I have applied for DSP and been rejected again! however my gp does provide me with medicals which give me 12weeks, and I am paid sickness allowance, I believe this is equivalent to newstart or similar

I don't have Fibro, but I think there are a few on here that do
stay strong for the battle is long ...
Pam

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2 weeks 5 days ago - 2 weeks 5 days ago #28880 by Alyndrya
Alyndrya replied the topic: Severe Pain Disbelieved By Doctors For 30 years - Possible Fibromyalgia
Hi Pam,

Thanks for replying. You’re on Sickness Allowance? Isn’t that only temporary when you’ve got a job to go back to? My big problem with Centrelink is that I have Agoraphobia so when they rejected me I had to give up, because I couldn’t go to the office and talk to anyone. I can’t be around people. I’m so worried about not being able to work and running out of money. It’s been a year and a half since work fired me for being in too much pain from my injuries to do my duties.

I’m really scared. The pain in my muscles and bones is becoming to the point where I’m crying all the time and wishing that I was dead just to escape it. I barely sleep anymore because I have to roll over every 10-15 minutes of the pain along my arms, legs, backside and back and neck becomes completely agonizing and unbearable. I keep bruising badly every few months too, but I always feels like I’ve been beaten up all over me but I also get stabbing pains like someone is jabbing me with a needle. My skin feels like all of the nerves have come to the surface and it’s burning. The pain everywhere has become so much worse over the last year. I’m getting so fatigued that when I stand everything goes black and I can feel a weird rushing through my body like I can feel the blood moving. I’m losing interest in food and I can’t take my medication (Several times a day) because I just don’t have the energy to get up and go to the med draw in my dresser, or make it to the fridge for some water. I almost faint when I stand. I don’t walk well anymore either and it’s like my limbs don’t feel like mine because they’re heavy and my balance is off. The migraines won’t go even for a second. I can’t concentrate as I used to and I forget things often, even just walking into the next room. It’s been a really long many years since my bladder even told me it’s full; I just get pain in the kidney and lower back. I have constipation for literally months at a time, which the hospital and doctors have told me many times is impossible. I’ve been that way since I was a kid, no matter how much I ate. It’s normal to me. Hands and feet always feel cold. Don’t get me started on mods swings. I don’t even know what it’s like not to be depressed and have a lack of interest in everything. I mean everything. I was a writer and I can’t do that anymore.. I loved reading voraciously but don’t anymore. My cats only annoy me. I just want to curl up and not move or interact with anybody. I don’t answer the phone most times or emails because I don’t want interaction with people. I lost all of my friends and even my family have bailed and never understood my pain.

I’ve seen dozens of doctors since I was a teenager and none have really don’t more than a blood test and when it came back normal they didn’t bother with more. I’ve had a lot blamed on Endometriosis too, or am told that I have a virus. I’m really amazed that I was never sent to any specialists. There’s a particular practice in Canberra that I went to for about 20 years and they’re the worst doctors I’ve ever met. I couldn’t get help from any of them and they wanted nothing to do with someone with an undiagnosed, long term illness. I was bounced around when one didn’t want to keep seeing me for months at so time and I didn’t get better. I didn’t get any help until one of the last doctors I saw felt a huge circular object in my stomach which turned out to be a 13 inch ovarian cyst, then I was slowly diagnosed with Endometriosis. Canberra Hospital actually told me that I didn’t have a Gynelogical condition at all and they refused to keep seeing me or allow me into the Endometriosis Centre. I had to go to Sydney to find a surgeon who diagnosed me almost immediately with Endometriosis and he couldn’t believe that Canberra Hospital hadn’t done surgery. It was severe a Endometriosis. I really don’t think that Canberra is the best place to have long term pain issues.

Doctors, Pain Clinic and Psychiatrist have no idea how bad things are with me and my dad told me months ago to hide it or I’d be put into the hospital Psych ward. I’m a massive psychological mess due to the pain and even my former Psychologist refused to see me after six months. He jut completely dumped me one day. My home life is...bad. I can’t look after myself. Pain is literally my entire life. It’s all I know.

Is anybody from here from Canberra who knows how to get into a Rhumatologist fairly fast? I have no idea when this public wait list at the hospital will be up and considering just how bad my full body pain has gotten I’m really concerned that I’ve gotten far worse through lack of treatment. Being unable to lay on my side or sit for more than 15 minutes without the pain flaring up is making things utterly unbearable.
Last Edit: 2 weeks 5 days ago by Alyndrya.

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2 weeks 4 days ago #28887 by Johnno
Johnno replied the topic: Severe Pain Disbelieved By Doctors For 30 years - Possible Fibromyalgia
Hey Alyndrya,

Could you do me a favour and check if any of your foods or drinks have artificial sweeteners as a lot of your symptoms are on a site talking about Aspartame which is a dangerous additive in processed foods and drinks which can be extremely dangerous in some situations .
Maybe first check the packaging and if it has artificial weeteners stop eating or drinking those product asap.
It could be a red herring but it’s worth checking .
Johnno

as long as I wake up alive I'm happy
Because it could be worse

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