Where to turn

Foxbat · ‎22-03-2023

Hi Everyone, please excuse the length of my first post but I am desperate. I am here to ask if anyone has been in the same situation as I currently find myself in. I have been struggling to get a GP to help me and have been suffering with a plethora of symptoms for many years now. I am currently on my 7th GP (who has also asked me to find another GP). I am very sensitive to medications and was diagnosed last year with Serotonin Syndrome (SS) by my psychiatrist but GP had no clue how to treat this and hence told me to find another GP. I was diagnosed with Type 2 diabetes shortly after commencing SSRIs years ago as my blood glucose levels spiked but since then (after a change in antidepressants in 2019) my blood glucose levels have always been in the non diabetic range. I ceased SSRIs in Dec22 and many of my symptoms/side effects have dissapeared. Jan 23 I started an MAO and in March I ceased 'all' meds incl MAO due to side effects. However, I still have many symptoms. I can't sleep, I still have constant headaches, my eyes feel like they are bulging out of my head, my joints and muscles ache and have now been told I now have peripheral neuropathy. I have been complaining about low blood oxygen levels for years but GPs didn't believe me but have never checked. They still don't believe me yet my feet and toes are hurting . I have an appt with an endocrinologist in a couple of weeks. I have had over 200 medical appt's in the last few years and don't know where to turn to get someone to believe me. Is there a doctor (anywhere in Australia, yes I am that desperate I am willing to travel) that deals in the aftermath of years of SS or even knows what it is? I read everywhere, to seek advice from a 'health professional' but I seriously cannot find one. I am extremely desperate for help as my future is not looking bright.

Again sorry for the long post.

Mark Z. · ‎22-03-2023

Hi Foxbat,

I'm so sorry for your challenge, it must be very frustrating.

Have you tried to contact RACGP - The Royal Australian College General Practitioners? I guess they'll be able to help you locate some resource.

RACGP - The Royal Australian College of General Practitioners

1800 472 247

racgp@racgp.org.au

Mark

Doolhof · ‎22-03-2023

Hi Foxbat,

I don't have any answers for you, I just want to acknowledge your battle in finding a GP who is able to help with your needs.

Wishing you well on your journey. Regards to you.

Foxbat · ‎23-03-2023

Thanks so much

Mark. I have not tried RACGP. Thank you also for the link. I will give them a go. Cheers.

Foxbat · ‎23-03-2023

Thanks Doolhof. I know there are many people out there suffering, but when it is happening to yourself, if it's bad enough, everyone else just pales into the background. I hope to be able to help others at some stage but atm, I need to get 'me' sorted. Thanks for your kind words. Cheers.

Doolhof · ‎24-03-2023

Hi Foxbat,

I suffered from Serotonin Syndrome for a while and was in hospital. The local Drs didn't seem to know much about it, I was diagnosed by a different Dr after a couple of weeks. I recall it was not at all pleasant.

Feeling unwell can be so debilitating. Not finding solutions and results can be frustrating. Are there some actions that ease your symptoms a little?

Hopefully you will receive some assistance soon. Distractions can help for a while, do you have activities that occupy your mind for a while and maybe provide a little escape from what you are experiencing?

Foxbat · ‎26-03-2023

Hi Doolhof, since I ceased all serotonergic meds at Xmas, most of the SS symptoms went away at that time but commencing an MAO in Jan bought on a new set of symptoms which accompanied the residual issues. Now I have ceased all meds (MAO, hypertensive and a 'stay-awake' stimulant for extreme daytime sleepiness) I have had some physical issues disappear. Not hypertensive, blood glucose readings normal, most headaches gone and I don't have to wear ear protection at the dinner table. Noise, even talking, hurt my head as did light. One of the main issues now is lack of, almost no, sleep. Constant churning guts in bed, feet feel like they are on fire and very restless legs to name a few. During the day I find my joints ache, my hands hurt a little and I tend to drop things as I am losing feel. Depression hits hard at times and is really bad when I am making doctors appts and trying to claim things through WorkCover since they are responsible for the side effects of my medication which I took for an accepted condition. A very frustrating system to deal with.

I have many appointments coming up in the near future but I fear any help is still a long way off. Over 5 years so far. Yet my symptoms of aching joints and muscles, eye pressure, gut grumbles etc do not go away at anytime and seem to be getting worse by the day. This only serves to fuel my anxiety and depression. I spend a lot of time working in my shed which usually keeps my mind off some things but I am getting restricted in my abilities and that then triggers thoughts and makes it extremely hard to concentrate. I do not want to be a sloth on the couch so I try to keep busy.

So I guess really, there is no 'escape' and so far no 'help'.

The GPs and some specialists over the last few years have said that my issues are caused by anxiety, or diabetes, or I need to see a dietitian or the best one - I am "making up symptoms to get more money out of WorkCover".

So many tests, so much actual medical evidence but no GP smart enough to put it all together. As you can see, overall it has been a very long term issue and I am so sick of it. Again, it is 3am and I can't sleep.

Sorry for the rant Doolhof.

Doolhof · ‎29-03-2023

Hi Foxbat,

There is no need to apologise for your need to express yourself. I have found it extremely beneficial, helpful and restorative to off load here on the forums many times. I also write thoughts down in a book to get them out of my head. At least by sharing your words here people may be able to assist or at least acknowledge and validate what you are experiencing.

Lack of sleep I understand, I have been on the work cover merry-go-round ride as well. Health issues can increase our anxiety and depression. It is not always easy to distract ourselves from thoughts that mess with our minds.

Would you like to share what type of things you enjoy doing in your shed? If not, that is okay. On the days when you are physically and mentally unable to do your normal routines, can you scale back a bit and gain pleasure from something related to your usual activities?

My mind was buzzing a bit yesterday, I wanted to do some crochet as I am learning a new stitch. I pulled out the lap top and listened to some talks on You Tube, that helped stop my brain from going off to the dark side.

Reading your list of symptoms and issues you have to deal with would be enough for anybody to cope with long term. I really don't have any answers for you! Wish I did.

My thoughts are with you. I come and go from the forum depending on my own mental health journey. I hope that "chatting" here helps you in some way! Regards to you from Doolhof