Tired of fighting

[Tavvy]

Keep getting kick in guts when trying to get help.

Low iron and blood count = me and my GP figthing for 6 month's to get an iron infusion. Which nearly end up needing a blood transfusion.

All the time my depression start going into full swing. My GP was hoping that with the iron and blood count back up the extreme fatigue and low movation would pick up they didn't.

GP sent a referral to my local public mental health clinic. There reply was no and to find some in the private sector. I real have no engery to troll list and phone people to see if they have appointments and if the bulk bill. Cause I sure as hell have no money for gap payment or a full payments ( On DSP and have been since 1990 for mental health .)

So everything falls back to me. I'm barely keeping afloat with chronic pain and Hypermobility spectrum disorder. ( HSD) and the depression part of my bipolar in full swing

Have tried in the last two years to try and get NDIS to help with my mobility to get out. Was denied tried to appeal but with out a report from an OT with A functional assessment I don't have enough proof. Can't afford the report as it ranges from $5000 to $10,000. I'm on DSP so don't have the money, I have no family that could help as we no longer speak to other. ( My family only consist of my Mother and two Brother's.)

I'm out of my own tools, out of spoons and out of engery. I'm not living I'm just existing and I'm over it I want to check out.

[Sophie_M]

Dear Tavvy,

It sounds like you have been going through alot and fighting and feel like you have fought for every bit of help you have gotten so far which would be alot of hard work. We are glad that you have come here and shared your experience with everyone and also we like you to know you are not alone.
We want you to know that there is always additional support available to you, whether it's from our professional mental health counsellors Beyond Blue (available 24/7 on 1300 22 4636) or our friends at Lifeline (13 11 14) or the Suicide Call Back Service (1300 659 467).

It can be really tough to make the step to make a call but the people who answer the phone are kind and helpful. They speak to people about this everyday and can offer useful advice. You don't have to go through this alone.

Sophie

[therising]

Hi Tavvy

My heart truly goes out to you as you face the insanity of certain systems and people that aren't working well enough to make a difference to you. I think if you were to get together all the people who suffer through extraordinary circumstances most of them would attest to the fact they've dealt with broken systems that aren't designed to support those who fall through the cracks. It's so wrong that so many, yourself included, should have to face the depressing nature of negligent setups.

Can't help but wonder what your GP is like when it comes to being a medical detective. Is he someone who thinks outside the square and does whatever it takes to get to the bottom of things or someone who simply follows recommendations, standard procedures? Is he a listener, to all the clues you offer him? Does he listen to your suggestions, your sense of wonder (as to what might make a difference, from your perspective)? Not sure if the fight for the iron infusion was between you and your GP or between the 2 of you as a team and the people who needed to give you the infusion.

Is your GP simply looking at HSD and accepting the symptoms that come with it as being part of the package or is he looking at the extreme fatigue as possibly being a whole separate issue? I'd never heard of HSD until you raised the subject here Tavvy. The pain that comes with it must be horrible. It led me to wonder how you manage to sleep through it. With sleep being a major energy restorer, I wonder how your sleep impacts your daily life. Do you get enough of the right kind of sleep or is the right kind of sleep pretty much non existent in your life? Not sure whether you've looked into it but what I came across in my very brief research is the research done into why there's such a high rate of sleep apnea in people who experience HSD. Wondering if you've ever had a sleep study done for sleep apnea. Sleep apnea's such a debilitating condition.

I imagine your stress levels are pretty high. Chronic pain's such a stressor but I'm sure I don't have to tell you that. Has your GP spoken much about the relationship between stress and inflammation levels? Has he spoken much about 'breaking the pain cycle'? Not sure if you can be on strong pain meds for an entire week, based on what other meds you're on, but is it possible to get a week's relief at a time. Kind of like every couple of months you get to take a 'time out' from the pain.

You definitely deserve better than what you're getting Tavvy.

[Tavvy]

Ehlers Danlos syndrome was revised in 2017 by a large conference to redefined and broadened as well as narrow the criteria. Under the new 2017 criteria I have Hypermobility Spectrum Disorder under the pre 2017 criteria I have Ehlers Danlos Syndrome type 3. I saw a rheumatologist and physiotherapist for assessment and diagnosis.

Had a sleep test and yes I have Sleep apnea I use a machine but i still wake up 5 to 6 due to pain. We are currently looking into possibility of getting a neve block for my legs as I'm limited in what pain relief I can take due to allergies.

The fight for the iron infusion was me and my GP fighting the hospital system. It was the hospital who said no. They wanted me to have further tests which both me and my GP told them I've have had scope from top to bottom and had biopsies done and these test have been done 3 times all with the same results they all come back normal. I've tried above recommended dose of iron tablets for over 6 months and my iron levels failed to got up. For whatever reason I seem unable to absorb iron through my digestive system. I've had iron infusion in the past so My GP was at a loss as to why they refused to do one. My GP kept pushing trying to get me an iron infusion trying three different hospital in my city till someone said yes. Some GP will do Iron infusion at there clinic but due to a history of significant allergies and sensitives my GP and the clinic I go to deem me to high risk to do one at the clinic.

I'm use to falling through the cracks and have been all my life

[therising]

Hi Tavvy

Sounds like you have a brilliant GP, someone who's a great advocate and who is willing to fight for what you're entitled to. Shame not all are like that. Definitely would be a relief if the nerve blockers work. I can only imagine how desperate you are to get a night of good sleep.

First heard about the importance of breaking the pain cycle from my chiropractor when he was carefully treating me for a bulging disc and nerve pain. He advised me to go to the doctor and get a script for strong painkillers. While a particular med which I can't mention here was like a miracle drug, I think that med made a massive difference to my mental health just as much. With the pain having gone on for some weeks, it had become unbearable in a variety of ways, often waking me through the night. I'm sure I don't have to tell you how pain and fatigue can pull your focus away from just about everything in life, how they consume you while you can't focus on anything else. To have that, long term, is what leads me to feel for you so deeply. Mine was only temporary.

Just read over a research article published by the HMSA (Hypermobility Syndromes Association). It was both fascinating and angering at the same time. The amount of people in the research study who reported initial misdiagnosis regarding their conditions led to late diagnosis and treatment. They seem to think this could be based on the fact a lot of medical professionals see these conditions as being rare, where in fact they're more common that what was once believed. It always triggers me when I hear of the closed minded nature of those in the medical world because it's the patient who suffers through such limited thinking. The revelation of these being multifunctional conditions is something that sounds hopeful - not just treating the pain, joints and obvious structures but also treating the gut, the nervous system, the mind etc. The thing I love most about researchers is their sense of wonder. They don't just wonder about certain conditions, they also wonder what makes a positive difference regarding those conditions. They keep looking 'til they find it (as long as the funding is there). While old school ways can produce a sense of hopelessness at times, research offers hope.

Read another fascinating online article. If you're interested, 'Bristol massage therapy - Massage and hypermobility'. The most fascinating part of the article - the topic of 'proprioception'. Maybe you've come across this topic before.