Friday, 21 June 2013

Chronic Fatigue gone. Time for Fibromyalgia.


As you may have read from other posts, I have a chronic illness. I don't usually name it. This is because it is hard to be diagnosed, and even then, you can sometimes find out years later that advances in medicine have discovered that your illness is in fact something else, or, because it is a 'syndrome' your signs and symptoms may not fit perfectly under the umbrella of its diagnosis, as not all cases are the same, nor is the condition completely understood. You may have most (plus others they're not sure about) but not all that they are aware of ...... So far. And so you are left hanging, suffering, not even having a name for what is torturing you incessantly. You may sense some frustration.
     One of the frustrations of having illnesses like Chronic Fatigue Syndrome (CFS) and Fibromyalgia is that of obtaining a diagnosis. These illnesses are diagnosed through a process of elimination. I have had blood tests with so many things written on the request, even the pathology worker had to look up some of the acronyms allocated to the obscure tests. I've had nuclear medicine bone scans, MRIs, X-rays, seen physios, doctor after doctor. After each person eliminates an illness or group of maladies covered by their specialty, I was referred back to my GP that said I had Fibromyalgia. 



     I had been working full time as a casual in retail and just accepted a management position when new strange signs and symptoms started to develop. I was getting joint pain without any swelling, heat, redness or response to NSAIDs (non-steroidal anti-inflammatory drugs - like ibuprofen and the like). My memory and concentration was deteriorating, as was my physical strength and joint range of motion. Where I was able to stand for the full eight hour shift and one weekly ten hour shift, I was having trouble lasting the day.
     My GP offered that my Chronic Fatigue Syndrome (CFS) might have been relapsing, however, I knew this felt different. The aching within my joints felt wrong and didn't last for only a few hours like before. The aching would be for days, disappear for a day or days, come again for a day or a few hours, but it never went away for longer than three or four days. My muscles started cramping, becoming even more tense than before - and we didn't think that possible. My strength diminished as my pain prevented me from lifting or moving more than a certain weight or moving in certain directions or against resistance.
     I soon had to resign from work as I couldn't physically perform my job and it hurt too much to continue punishing myself for hours. This was in June 2011. I continued to discover more strange symptoms that didn't make sense and brought them to the GP and after extensive investigations and referrals to other doctors, he suggested I might now have Fibromyalgia.
     I had heard of the condition before, however never paid much attention to it as I always had enough to deal with medically without having to think about other illnesses. I looked it up and things started adding up. 
    I was experiencing (and still do) strange moments of dizziness and waves of vertigo that would pass after two seconds (just long enough to confuse me and then reorient me), nausea, times when my eyes just wouldn't focus on anything correctly, pain to touch (this included just to lie down, clothes/sheets touching me, resting a hand on my arm, sitting in a chair), problems with my memory and concentration - what they call 'fibrofog' (I need to write things down when I think of them and keep a diary with me to ensure I don't forget arrangements, though I still do, especially because I'm easily distracted and not able to write things down straight away), joint and muscle pain that will not respond to any pain relief - not just NSAIDs, odd nerve sensations - especially along my ulnar and sciatic nerves, strange burning or electric shock burning sensations and sensations of ant bites over my knuckles. I twitch in my sleep and sometimes when very relaxed, irritable bowel syndrome and I now have significant atrophy of my arms and chest due to extreme pain preventing me from exercising and using them often.
    Everything I do hurts. There is not a moment I am not in pain. Even in sleep, I have been told I sometimes whimper in my sleep especially when rolling over. I have trouble pouring drinks and opening drinks/jars. I drive, although it is extremely painful. I will not sacrifice this independence. I have trouble walking most days as my feet feel like I am walking in 6 inch heels after 4hours of partying....and the shoes are two sizes too small. Some days I swear I can feel the bones in my feet sliding over each other.
    This month, we have been to an orthopaedic surgeon to investigate a tumour on the bottom of my foot. It is on the ball of my left foot, under the head of the 4th metatarsal. It is large enough to be palpated, it moves a little and if I put my foot up, you can see the bump. While I was there, I mentioned that I have, in the last 9-12months started developing ganglions around the ankles and that my right ankle was hurting enough to make it harder to walk than the tumour on my left foot. There was a lump but it felt different.
    The dr had sent me off to get MRIs as xrays and ultra sounds had shown nothing but interesting "we don't know what they are" lumps. I even had the head radiologist come in and have a play with the tumour on the ultrasound because he had no idea what it was.
    I had two separate MRIs as they don't like putting you in there for too long. The results confounded the radiologist reporting on the images. He described all he saw in detail, however, and explained that there was no diagnosis. 
    The tumour appears to be a mix of oedema and fibrosis, though concentrated mainly in the lump we can see and feel, the images show it spanning across most of the ball of my foot :-/ He then went on to describe that I had significant swelling and fluid in multiple joints and tendon sheaths. 
     He seemed way more interested in my right ankle though. He describes a 40-45mm mass lesion smack-bang where I've been complaining about, surrounding the joint capsule, synovial linings and enveloping ligaments and tendon sheaths. He then goes a little vague and says that it is a combination of high and low......oh and intermediate signal and that "the diagnosis is broad. Please keep me informed of this patient's progress". This can be translated as...we have no idea what the eff it is, it looks cool, she sounds interesting so let us know what you find out!
    The orthopaedic surgeon has suggested we take a biopsy just to see if we can get a diagnosis. If we get a diagnosis, we maaaay get a treatment. He said the fibrous tissue may be like a cancer (not in its lethality) in that it will continue to grow. Like a weed. He may have to surgically remove as much as he possibly can, but there will always be bits they cant get, and so it will grow back again. I'm really hoping this is not the case. I've had enough of invasive procedures to last me a lifetime.
    As for the original reason I went to the surgeon? He says the lump looks like it will be one of those 'grin and bear it' things. Unless it prevents nerve or blood supply, there is no need to remove it. The scarring from the surgery may be more damaging to my ability to walk than the current lump. 
     After the biopsy, we are hoping for a possible diagnosis - and then the possibility of a treatment. We are still considering going to a rheumatologist. Their job is to investigate the weird and wonderful cases that no-one else understands or know what to do with. Maybe we might get some help. Maybe not answers, or treatment - but I'm willing to try.
   

    So that is the gist of my current story. There are many more Fibromyalgia things that I have forgotten to mention, of that I'm sure, and, hey, that happens (especially because of fibrofog). 

     Again, any questions, do not hesitate to ask. If you want to share an experience too, please do. I am a sympathetic and empathetic ear.

Until another time,
Caroline

Note: I have left out some pretty private information out of this purely because a lot of people don't want to read about that kind of thing. I have a policy of complete honesty. It is too hard to lie to someone and have to remember what I said to someone. It is just.too.hard with my brain problems. If you have any queries about how you are feeling and want to talk to me about it, I am always more than willing to share my story with people. If you wanted to know more or are also suffering from Fibromyalgia and wonder why certain symptoms you experience aren't mentioned here, I'm completely fine talking frankly about them with you....privately. I just know some people would not like to go on a sewing blog and read able some of the unpleasant symptoms that are associated with certain chronic illness - and mental health.
    I would also like to mention.  I have been clinically depressed for 10years now. Any suffering you are going through. I have felt it too. Unfortunately, my medications, their strength and sometimes the trialling of new medications, can sometimes mean that my anti-depressants are not always as effective as needed. I can have a few normal days, however the majority of the time, the reality of all that I have lost, the potential I have lost, the career that I did not achieve, the friends I have lost, the life I could have had, the body that functioned normally.....everything, sometimes overwhelms me. And there is no anti-depressant known to man that can help with the grief that accompanies that.

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