Sometimes not receiving a diagnosis can be as upsetting as actually getting one. I know it seems totally irrational and illogical to feel that way. After all, who wants something to be wrong with them?
Surely not being diagnosed with something is good news?
What you need to realise is that it’s not about wanting to have a diagnosis as such. It’s the hope that someone might be able to explain why you feel like you do and maybe, just maybe, they might be able to help you.
When you have been battling with symptoms that ultimately interfere with your abilities to perform your usual day-to-day routines and tasks then you would give your left arm for an answer that might bring it all to an end.
I learned all over again what this feels like just this past week. I’ve been there umpteen times before I got my diagnosis of fibromyalgia. Test after test came back as normal and I just couldn’t get my head around the fact I had so many debilitating symptoms and could be told I was “fine”.
When I finally got told I had fibromylagia, I thought that would be the end of the diagnostic process. No such luck for me!
Back in December, my body decided that it would give me something new to be concerned about. Numbness in my left leg and foot.
Well, that freaked me the hell out, so off I went to see my doctor. Again and again, until I was taken seriously.
What followed was months of waiting while I was being driven demented by on and off pins and needles, numbness, tingling and strange sensations down my left side. Oh and some bother with my right eye to boot.
Finally, I was seen by a neurologist.
He did his neuro-type examinations, poking and prodding me and concluded that I was stiff through my left side, had reduced feeling (to a pinprick test) and that some of my symptoms did not tie in with fibromyalgia.
Next up, an MRI.
At this point, I was floored with severe, debilitating fatigue. Now I have experienced this before, as I am sure many of you have, but the most it has lasted for me is a few days and then I can usually get myself back together and carry on.
I have only previously been off work once due to fibro and that was for one week. This time I was absent for work for 7 weeks in total (two of which were annual leave).
After the first week, I stupidly tried to return. I thought that getting out and about would make me feel better. Nope!
What it did was make me hardly able to get out of bed. Whoops!
I’ve still not fully recovered. It’s been going on for so long, I’ve now got the fear that I’ll never be able to get back to my ‘normal’ level of fitness. Despite all this, I have returned to work and it has been tough!
My work has been great, allowing me a phased return to work with reduced responsibilities and hours but each day I struggle through and come home knackered.
What has kept me going is the hope that I might get some answers from the MRI scan and that I might get some help in feeling better.
Maybe it wasn’t fibromyalgia after all? What if it is something else that can be easily controlled through medication or even better… cured?!
Those hopes were dashed on Thursday when I received a letter stating there were no abnormalities detected in my MRI and that my symptoms could not be explained from a neurological cause.
My consultant wrote that they may be a result of my known diagnosis of fibromyalgia.
There was obvious relief at first but then something hit me. This is for forever. Holy shit.
My new symptoms, as horrible as they were, reignited some hope in me that the chronic part of this illness might not actually be true.
I’ve tried so damn hard over the last year to get better.
If I tally up the amount of money I have spent in the last year on my health it’s actually pretty damn scary.
Sure I’ve learned a hell of a lot of things that have proven to be helpful to me but I’ve also learned some other important lessons too.
Acceptance and being realistic.
These are two essential components to life with chronic illness and I have let myself drift away from them recently.
I’m more determined than ever to improve my life. But from this point forward, it’s going to be from the perspective of acknowledging my illness and living in the here and now.
How do you deal with the forever part of chronic illness?
How spooky, I was thinking about similar lines myself this week. I accept my endometriosis diagnosis completely, but it moved the goalposts this month when I got diagnosed with diaphragmtic endometriosis (that’s where it totally grows on your diaphragm and causes chest pain, breathing problems and shortness of breath). They’re not sure if it’s on or near my lungs yet either.
Lovely! Now I’ve come to accept what I’ve only recently come to appreciate. Chronic illness is forever, but there’s always the prospect it can get worse too! That’s okay, because the second diagnosis is easier than the first one. I’m almost more prepared for it this time.
Really sorry to hear about your diagnosis Michelle. I understand how debilitating it can be for you. I hope there is something that can be done for you to help relieve your symptoms.
I totally get what you mean about a second diagnosis as being easier to accept. I was fully prepared for another blow and I guess it took me by surprise that there was nothing ‘new’ wrong with me. It’s tough to think of conditions becoming worse but it’s the sad reality for a lot of people and I guess I may be one of them.
I think any diagnosis (even Fibro) is better than none at all. As long as there is none at all you can’t help wondering “is it all in my head?”, and if there might be some answer for you, some treatment that might help, if only they could find the right diagnosis. I know for many Fibro feels like a lack of diagnosis (I know it did initially for me, and still at times). I think there has to be something else, but I’ll take Fibro over nothing at all. It’s hard because for so many years too many drs (and still too many really) looked at Fibro as a trash can diagnosis, as a label to throw at people. But, it is real and it does provide us with a starting place for treatments. Unfortunately, there’s no one treatment (or even a few) that seems to work for the majority, and there’s not enough research out there to help us along. So, we still wade through it, mostly alone, often without even a dr that understands half of what we are dealing with. I know how frustrating it is to hope that maybe this test will be the one that shows something treatable, and have it not be (been there too many times).
Any diagnosis is definitely better than none, you are very right there Julie. I just wish people would take fibro more seriously & not dismiss it as though it’s not a real diagnosis. I had someone ask me if I had considered whether my symptoms were psychosomatic just last week! And I’m constantly asked if I’ve tried this and that as though I should have cured myself by now. I’ve just gone through such a bad period, one like I’ve never experienced before, so I couldn’t help but think, or rather hope, something else was going on that could be treated. The thought of being that way due to fibro was tough to take. Thankfully I’m getting back on track now but I’m not as able as I was before and I can’t see me getting back to working full time 🙁 I guess I just see fibro as a bit of a sucky diagnosis because it’s a case of ‘here’s your diagnosis, there’s little we can do to help you, deal with it’. I guess I wanted to make sure there was nothing else going on & there was part of me clinging to the hope for another answer as I was desperate to get back to my usual self. Now it’s all sunk in I’m
relieved the MRI was clear as if it wasn’t the outlook would have been scarier than fibro.
It took me almost 10 years to get a complete and proper diagnosis. I went through a lot. This post really moved me. Thanks for sharing.
I keep pestering my doc for different tests, even though both he and I are pretty sure they’ll come back as normal. All in hope that they will show something that he can give me a shot for, or a certain kind of antibiotics that will cure me… I know that it is unlikely to happen, but somewhere deep down I still carry some hope.
Frida I am the same. I did not accept this illness until I had pretty much excluded everything else. Even then, I recently had yet another round of blood tests. I knew damn fine they would come back as normal but I couldn’t help but hope that they might show something treatable. I hoped that maybe my thyroid was performing under par or my iron was low… anything to explain why my health has been so poor these last few months. But no. So onwards I must keep on going!