Hi,
I’m 33 and from Melbourne, Australia
I have always been the sick kid for as long as I can remember.
At age 18 months I was diagnosed with severely low playlets and required transfusions. Luckily this rectified as I got older.
Growing up I had asthma, allergies, hay fever and allergies to animals. Being near a horse would trigger a big inflammatory response in hives, puffy and watery eyes, and a severe asthma attack that would result in needing a nebuliser. My allergies have lessened to a certain extent but I still struggle daily with asthma.
At age 4 I had Grommets and Adenoids surgery as I had difficulty breathing through the nose.
* noisy breathing.
* snoring.
* stopped breathing for a few seconds during sleep (obstructive sleep apnea)
* frequent "sinus" symptoms.
I suffered from a sore tummy from a child and was told by school nurse it was in my head! Fast forward 20 years and was diagnosed with Lactose, Fructose and Wheat Intolerance!
When I was 12 I had my left kidney removed as it has never grown past the size of a bean and had stopped working. My remaining Kidney is healthy and functioning well.
Two weeks later I had a cyst the size of a Grapefruit removed from my left Ovary. I started having severe menstrual cramps as soon as I become a woman basically. I was diagnosed with Endometriosis in my 20’s and have been on contraceptive since I was 13.
Throughout my teenager years I often had unexplained aches and pains, pins and needles and numbness but was never really listened to by doctors. One specialist suggested my aches would go when I fell in love!! 🙄
At age 16 I was diagnosed with Anxiety and Depression.
At age 21 working as a Personal Care Assistant I found out I had 2 lower lumbar bulged discs. It moved into chronic pain and at one stage I required intense rehab and needed a frame as my back just locked and I was locked in a forward bending motion.
Throughout the years I’ve battled with chronic headaches/migraines and unexplained aches. I just put the aches and pain down to the chronic back pain.
At age 30 I had a complete mental breakdown and required over 12 months over three years of psychiatric hospitalisation. I was very hard to medicate and after trialling 12 different antidepressants i ended up having 18 ECT treatments which was horrendous but effective. I’ve been on a combination of antidepressants and antipsychotics until recently. I’ve done a lot of work therapy wise, attended lots of groups and learnt a lot of tools to help myself. I have learnt to accept the way I am and accept that I may always struggle with my mental health but I don’t have to let it rule me
I was told I would never work more than part time. Last year I returned to work and I’m loving it and I’m the happiest I’ve ever been. I’m in a good place mentally, physically and in a very supportive relationship. I don’t sweat the small stuff and I’m a very positive person.
Excitingly we had recently started trying to conceive.
4 months ago my left hand started aching. It was a deep ache but I pushed it aside and. For the next few weeks it progressively got worse and pain radiated up my arm and into my shoulder and neck. MRI was done and luckily only showed a mild disc bulge in the neck. The pain continued to get worse.
My hand swelled one night to the point it looked like it would burst. Showed GP the photo who sent me for blood tests. Tests showed high anti inflammatory markers indicating Rheumatoid Arthritis.
I went to see Rheumatologist who sent me for MRI with contrast. I received the results last week and has shown dislocated thumb, severe degenerative arthritis in thumb and wrist and a small benign tumour. This will need to be operated on sooner rather than later and pins put in place as the bones are grating together and it feels like a hot knife is searing into my hand.
Whilst undergoing all the tests Rheumatologist diagnosed me with Fibromyalgia and he thinks I have probably been suffering with it since I was a Teenager.
As I have been seeing a lot of my GP he noticed extremely high blood pressure. He said it’s unusual for someone my age to have such episodic high BP. As well as this my heart rate is often elevated, intense sweating, headaches, anxiety. He decided he would test me for Pheochromocytoma a rare tumour on Adrenal Gland. My first blood and urine results have indicated readings for this. I see him tomorrow for results. If so they will need to remove the Adrenal Gland.
I can’t have the Hand Surgery until the Pheochromocytoma is sorted as it’s too high risk under anaesthetic.
As I am in a good place mentally and we are trying (well were) but due to all this have put on hold, I have under my GP’s care weaned off a high dose of Cymbalta and antipsychotics which I wanted to come off as it says there are risks to unborn baby.
BUT since coming off Cymbalta my pain levels are extreme. My whole body hurts even down to my fingers and toes. I’ve been getting pain in my jaw and face and in places i never thought would feel pain.
The most painful at the moment is my hands. They are both cramping so badly and becoming numb. I’ve been having hot showers, hot wheat bag, ice, massage, magnesium wash, magnesium spray but nothing is helping.
I am at my wits end so my doctor suggested Amtriptyline. I’ve contacted the medication line to get advice from pharmacist for pregnancy as I just have to resign to the fact I’m going to need some help with the pain and this has had had highest amount of research. I have been on Amtriptyline since Saturday so hasn’t had chance to do anything yet.
I have been taking Panadeine Forte, and Palexia but the pain is just so intense and it’s really affecting me both mentally and physically. I’m a very positive person but at the moment I’m really struggling and also grieving this diagnosis. I’ve become so reliant on my partner for so many things and I don’t want him to feel like my carer.
I had a friend say last week “oh well at least you don’t have cancer” luckily she’s the only one to say something along those lines and everybody else around me are very helpful and supportive. I had to laugh as she’s a self proclaimed hypocondriac and wouldn’t cope with one of these issues.
Sorry for such a verbal vomit but has actually helped me by writing everything down.
I have tried massage, stretching, meditation, heat, ice, hot baths/showers, sprays, creams and take Magnesium and Glucosamine and take tissue salts. As well as painkillers I have started trialling cbd oil.
Does anyone have any tips on how to alleviate or reduce symptoms and help me get my head around it all for as I’m desperate
I truly send love to you all as we fight every single day x
Recently diagnosed, need help
Help with fibromyalga
is this fibro?! Please help!
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