My Diagnosis - Before & After

If you want to know the whole story - get comfortable, or make a cuppa and then get comfortable as this is a long story. Most FM patient's stories are I'm afraid lol.

It all started four days after my son was born, I'll never forget that date, or that moment. I was lying down in my hospital bed (I'd had a c-section and was still in quite a lot of post op pain), suddenly I felt like I couldn't breathe properly. My chest felt extremely tight and breathing in deeply either hurt, or was impossible. I figured this was probably normal...I don't know why I thought that...so I tried to ignore it for a while. Every time I fell asleep, I'd wake up suddenly just after dozing off feeling very short of breath. By 8 'o' clock the next morning, I was worried enough to talk to the nurse. She took my blood pressure, pulse and temp - everything proved normal. She then did an ECG which also proved normal but she contacted the doctor on duty as I was still feeling very breathless, not to mention scared.

The doctor arrived soon after and told me she thought it was simple PND related anxiety, I told her she was wrong. She then sent me off (in a wheelchair) to another part of the hospital for a chest x-ray and a CT scan of my lungs to rule out the possibility of a blood clot. I was so incredibly scared during the CT scan...I'm naturally claustrophobic, but this was something else. I cried the whole time. I also had some blood tests. Less than an hour later, all the results came back. Everything was clear, everything was fine except for the fact that I was severely anemic due to the blood loss after my c-section. I've always been anemic, since at least the age of 11, but never like this. Not even after the birth of my daughter 8 years ago. I was told my chest pain and breathing problems were due to the anemia and would subside within a few weeks provided I took the iron medication they gave me. Looking back, I knew at the time this was wrong. I knew this wasn't anemia...but given every test I had done came up fine, I decided to go along with it.

A few days later I was out of hospital and home with my husband and newborn son. Emotionally, I felt on top of the world - I'd just given birth to the most precious, beautiful little being I'd ever laid eyes on. Physically, I was going downhill fast. I almost immediately found out that coffee, coca cola and everything else containing caffeine were off the menu. I'd never had a problem with caffeine before, but now it was sending me into what felt like a amphetamine induced seizure. Whatever I ate seemed to send me running to the bathroom...sometimes within minutes after eating. It was either strong nausea, vomiting, or uncontrollable bowel problems. Sometimes, it was all three - at the same time. I quickly started eliminating certain foods from my diet, mainly junk foods, foods high in salt, sugar, fat. I stopped eating/drinking anything with artificial sweeteners of any kind (I'd stopped using aspartame years ago as I already knew that was deadly). Nothing changed though, I still felt sick pretty much all the time. The chest pain and breathing troubles were now keeping me awake pretty much 24/7...even when my breathing was OK and I felt like I was getting enough oxygen, I was simply too afraid to go to sleep as I'd always wake up breathless. It was so bad one day that I called an ambulance as I was certain I was having a heart attack. Well, I wasn't. The ambulance officers put it down to anxiety.

By now, about five weeks had passed. My son was growing so quickly and thriving. My husband was doing everything he could to make my life easier, and by this stage, he was becoming more and more concerned. My close friends and close family were also worried...what seemed to concern them all the most was my breathing. Just having a conversation would leave me out of breath, just changing my son would leave me breathless. Getting in and out of the car, making the bed, doing the dishes...simple things would leave me gasping for air. By this stage, these sorts of things were making me extremely tired too. I remember walking out to get the mail one day...and luckily my son fell asleep that afternoon, because that one mundane task required me to nap for three solid hours. My life was becoming a nightmare, I needed help and I needed it NOW.

I'd been to the doctor a couple of times by this stage, after each visit I was told that all of these problems stemmed from my Anemia. I was fed up with that BS answer and asked a different doctor (at the same surgery I'd been to prior) what she thought was wrong with me. She sent me for blood tests. The results came back and she was concerned...my white cell count was low, but my platelets count was high. She said these results indicated my body was fighting some sort of infection, so she sent me for more blood tests. No infections were found. A week later, she sent me for another blood test. This time, my white cells were in the normal range, my platelets were high but declining and my anemia had gone! She told me she felt relieved because she'd suspected Leukemia and that my symptoms were probably the result of a low grade infection "somewhere" that was "obviously" getting better judging by my platelets count. She told me that it was also not uncommon to have slightly elevated platelets levels after a pregnancy. I felt somewhat relieved...she said whatever this was would go away on it's own....at this point, I had hope that whatever this was would soon go away. I had hope I'd feel like me again.

A few days later (a few being four days...I remember it well) I was having trouble with my grasp. I kept dropping things like cups, my phone, my vitamins etc. I'd be in the middle of changing my son and my fingers just wouldn't bend the right way...which made changing him rather difficult. I found that opening jars or bottles was almost, and often, impossible...I was either too weak, or it hurt too much. By this stage, everything hurt. I ached all over and continually felt exhausted. One afternoon my friend was over having a cup of tea and she witnessed what was quite a distressing event to me. I was feeding my son a bottle and all of a sudden I couldn't get a grip on it. I dropped it 3 or 4 times before I let her take over - I just simply had no control over my right hand. I followed her advice and "got on the phone NOW" and made an appointment to see my doctor later that day.

My usual doctor wasn't there, so I saw a new one. I told him what had happened that afternoon along with everything else. He put a lot of it down to being tired - in other words he thought I was clumsy. He put the exhaustion down to being a new mum, he put the pain I was feeling down to being tired. He was however concerned about my breathing problems and ordered another lots of blood tests and a chest x-ray. He thought I was anemic again. X-ray was clear, blood tests were normal...I wasn't anemic. His answer? "You're a new mum who needs more sleep and exercise".

About a week later, after being extremely ill, I'd had enough. I went back to the doctor yet again, this time I saw a different one. I needed to know what was wrong with me!! I was terrified!! I was told I was gluten intolerant - I was told that gluten was the cause of every single problem I had. There were no tests done to determine this, but the doctor said he was certain of it. He was right about me being gluten intolerant as the bloating, vomiting and IBS is now managed with my diet...but he wasn't right when he said I'd feel all better if I stopped eating it.

Over the next few weeks, the pain some days was unbearable. My husband gave up work to take care of me - we had no choice. I couldn't sleep, and when I did sleep it didn't even make a dent in the fatigue. By now, I was forgetting things. Important things. Some days I could barely move, the pain in my joints and muscles were that bad. Sometimes I couldn't walk down or up the stairs...I'd have to crawl. Sometimes it would (and still does) take me over an hour to get out of bed, either because of pain or muscle paralysis. One day my throat would be sore and I could barely speak, the next my stomach would be cramping so badly that I thought my appendix had burst or something. By now, the chronic migraines were stopping me from even being able to string a sentence together most of the time.

My son was now just over 2 months old - my husband needed to go back to work and I just needed to feel better. I needed someone, something, ANYTHING to make whatever this was to go away. I went back to the doctor...the 4th doctor I'd seen at the same damn surgery. I sat down in his office and just started crying uncontrollably. He looked at all my blood test results that I had with me. He looked at all the x-rays. He then told me he wanted me to go for more blood tests...he wanted to rule out certain types of arthritis, certain infections like Ross River Fever, Lyme Disease and Mono. I went for the tests, I was now on a first name basis with Mike - the guy at the pathology centre. He joked that if he took any more blood from me I'd probably be able to survive any vampire attack lol.

About a week later, I went back to the doctor. As suspected, my blood test results were clear. "You're fine, so just relax, enjoy your baby" - that's what he said with a smile. I think he expected me to leave as he thought the appointment was over. He noticed I hadn't moved and that I was looking at him with an apparently, in his words, "puzzled" look on my face. I then told him that my husband had given up work, I could barely move some days, I couldn't sleep and even when I did I was exhausted all the time, the pain was constant, the migraines were constant, I'd be sick sometimes for no reason, I couldn't keep a firm grip of ANYTHING any more, I kept forgetting things etc etc ... he already knew all of this but I felt the need to tell him again. I started to cry, again, and asked him - in my words - WHAT THE HELL IS WRONG WITH ME?! He then told me that all of this was Post Natal Depression. He typed up scripts for sleeping pills and made me an appointment with the clinic counselor. I was deflated....exhausted...defeated. I knew this wasn't true...but I was just too tired to fight it anymore. I tore up the sleeping pill script and never went to the appointment with the counselor. I told my husband what the doctor said, he immediately became angry and knew that "depression" wasn't the answer, especially since I've been dealing with Depression & Panic Disorder since 2001.

Over the next week or so though, I started believing it really was "all in my head". Whenever I couldn't breathe properly and needed my Ventolin and oxygen mask, I told myself it was PND like the doctor said. Whenever my knees hurt so bad I could barely walk, I told myself it was PND like the doctor said. Whenever I felt my glands up and my throat burned, I told myself it was PND like the doctor said. Whenever I had a migraine so bad I couldn't see straight, I told myself it was PND like the doctor said. You get the picture - self doubt had well and truly set in. But then one morning, after it took a good hour to just stand up whilst getting out of bed, I collapsed back down in agony. My knees were red raw....when I touched them, I noticed the joints in my fingers (BOTH HANDS!) were as red as tomatoes. Can PND be the cause of this? Like the doctor said?.......Fuck the doctor. No it can't.

After an extremely hot shower and far, far too many Ibuprofen tablets, I got on the phone to a surgery I'd never been to before and basically demanded an appointment with whatever doctor had one available first. I gathered up every blood test result (enough pages for a novel) and my x-rays and scans and pretty much threw them at the doctor. I told her I'd been to the surgery across the road so many times I'd lost count, was passed around like a football between doctors, had test after test after test....3 chest x-rays...more blood tests and no answers!! I was sick of knowing what I didn't have and just needed to know what I did have. I also told her if she thought this was in my head then to refer me to a doctor who gave a shit. Yes, they were my words. She took my hand, looked me in the eye, and told me I wasn't depressed. She didn't know what was wrong, but she promised me we'd find out together. She kept all my blood tests so she could study them and ordered every single test I'd had (including in hospital after my son's birth) to look at. She sent me for a few more blood tests and asked me to keep a record of my body temperatures for the next few days.

A few days later, she told me my results were back and were "all over the place". My calcium was high, my platelets were now low...but my white cells had risen. My body temps were also low. Too low. I thought "low" was good but she said consistently low body temps are just as bad as high ones. She'd tested for Lupus, and it wasn't that, however she wanted me to have a test every 12 months just in case it isn't showing up yet. She made a phone call with me in her office and told me she wanted me to go and see a specialist in a few days. She made all the arrangements for me and told me to come and see her afterward. She said something was wrong but she didn't know what. I was so relieved I'd finally found a doctor who LISTENED to me.

I went to see the specialist and instantly recognised him. He was the doctor who discharged me from hospital and told me that it was very important to take my iron meds as I was so anemic at that time...I remembered thinking how nice he was and was relieved to be seeing him again. He looked at all of my test results and read the referral letter from my doctor. He looked at me and said "sweetheart, your face is telling me a story. How much pain are you in?" He said this in such a compassionate way that I started to cry. I apologised. He then came over to me from the other side of his desk and gave me a hug. I don't give a shit whether this is "unethical" or not...it's what I needed at the time. I think I sobbed on his shoulder for a good five minutes. Through my tears, I managed to mutter the words "please...please help me". He gave me a glass of water and asked me to lie down so he could examine me. He started applying pressure on my knees...he soon stopped when he saw how much pain it caused me. He then started applying pressure to certain points in my neck and back which also hurt. He then looked at my hands and saw how red my finger joints were, he looked straight up at me and told me to come and take a seat back at his desk. I still remember word for word what he said. "You have Fibromyalgia". I was scared as I've seen what this does to people but didn't know everything about it. I instantly replied with "I know someone with this, they're in a wheelchair" - I was just so scared. He told me that he would do absolutely everything in his power to ensure I didn't end up immobile, but that there was no cure. There is no standard or one treatment and that we'd have to work together so I could manage this. He told me that most, if not all, Fibro patients have ALWAYS had this disease - it just doesn't usually show up until a significant event happens which can be trauma, an accident, or in my case - surgery (c-section). He told me he was going to prescribe different medications consisting of painkillers, anti-inflammatories and anti-depressants. He told me chronic pain meant low serotonin, so the anti-depressants were just as necessary as the other stuff. He also told me that it's the pain that causes depression and not the other way around. He told me it was important to let myself grieve as FM is a lifetime fight that unfortunately, I'll always have to battle. He then bought my husband in and explained all of this to him. That night, we both cried. While we were devastated, we were also relieved to finally know what was wrong. My doctor who referred me to him was also sad for me, but glad we now knew what we were dealing with.

After taking the medication the next day, I had a terrible reaction to the anti-depressant. I called him and told him it made me very sick and very, very panicked. He told me to cease it and prescribed a muscle relaxant and anti-panic medication which luckily, I am tolerating. I saw him again 2 weeks later and he told me that since the painkillers aren't working too well, and since my stomach doesn't handle the anti-inflammatory too well, I'll need to start Morphine sooner rather than later. I'm still deciding whether or not I want to do this.

A few weeks ago, my ears started ringing and they haven't stopped. When it first started I figured it was a part of Fibro, and it can be for many people. However, a few more problems have come to light since my diagnosis. My balance is now very bad...it's never been good....but it's so bad that we need to move as I can't live anywhere with stairs. Doctor's orders. I am also having uncontrollable tremors in my eyes and vision problems. I coudn't see for about 40 seconds 2 weeks ago and immediately rang my doctor. She said that in her opinion, the balance and vision loss/problems isn't Fibro and suspects MS - she demanded that I come in so she could refer me for an MRI which she wanted me to have immediately. I declined. She told me how she wouldn't be asking me to go for an MRI if she didn't strongly suspect MS but I told her I couldn't deal with any more tests or bad news for that matter right now. She said she understood but that she'd contact my specialist so he could talk to me about this at my next appointment. She also made me promise to go to the ER if I lose my vision like that again "even for a second".

I know I need to face an MRI soon and that it's for the best. I also know how strong the possibility of MS is according to my doctor (as well as it being in the family)...but for now...one chronic, disabling, incurable disease is enough. It's been just over a month since my diagnosis, I'm guessing it'll take me at least another two to fully accept this. I'm not in denial - but I'm not quite at the "acceptance" stage of the grieving process yet.

On a final note, I can say that I'm looking forward to getting to the stage where I can tell people "I have Fibromyalgia - Fibromyalgia does not have me". But for now, it does. And that's OK. I know I'll never beat this, but I will fight it. I have to.