As the title says Fibromyalgia is not just Fibromyalgia! Let me explain, comments I have heard in recent months include “x has got chicken pox”, “y” has broken their leg” and “z” has had a nasty tummy bug. We all understand what we have been told and make the appropriate comments when we hear things like this. But when you tell somebody you have Fibromyalgia firstly there is a good chance they have not heard of it (still! That is why so many Fibro Warriors are doing what they do) and if they have heard of it, they have gained information from basic sources like the NHS. Please don’t think I am criticising the NHS information, it was the first place I looked too when I started suffering from a variety of symptoms (and it was greatly improved last year compared to the information provided when I was first being diagnosed) however it just covers the basic facts.
Fibromyalgia is a Syndrome
Fibromyalgia is a Syndrome and as such, you can take a group of people affected by it and they will all have a slightly different story to tell. Hence the title again. Some of these symptoms can be managed with medication such as pain. In general, when I am not in a Flare-up, my pain levels are fairly manageable although I take a lot more prescription strength co-codamol than I am sure is good for you. You can find out more about Flare-ups in my article here.
The Most Obvious Symptoms
Well, let’s kick off with the obvious symptoms then I’m sure you have read about pain and exhaustion, here is an example of how these things affect me.
If you have Fibromyalgia you are going to have pain, it is a simple as that I’m afraid and the pain is going to feature in all four quadrants of your body, but hopefully not all at the same time for any length of time. As for the type of pain well that can vary. I have experienced deep bone pain similar to after breaking a bone this is really achy and when it comes. Joint pain varies at times it is sudden and sharp a bit like when you twist an ankle. This can last from a few minutes to a few hours. If it is in your legs movement becomes pretty much impossible for what is hopefully a short time, there have been times I have been walking across a room and suddenly found myself barely limping to be back to normal (Fibro Normal) by the time you get to the other side! The other type of pain I experience is nerve pain. Several years ago I had an accident and cut my hand badly which damaged my tendons and nerves. While the nerves were repairing after the surgery I often had shooting pains in my fingers and the pains I have now are much the same.
Along with pain, the other symptom that is a given is fatigue and exhaustion. The conditions Fibromyalgia and Chronic Fatigue Syndrome share a core of several symptoms and the main distinguisher seems to be which is more predominant between the pain and the exhaustion. Personally, that feels a little bit simplistic to me as when I am in a Flare up the fatigue can take over as the more prominent symptom for varying lengths of time. When I talk about exhaustion I am speaking in terms of getting up in a morning and feeling like you haven’t even been to bed. Even if you seem to have slept through the night. I’m talking about your body feeling like you have just competed in a Triathalon, (guessing what that may feel like from the look of the competitors afterwards) when you haven’t even exercised.
Fibro Fog is a special type of brain fatigue and not special in a good way! Let me explain. You are having a conversation with someone and you suddenly stop speaking because either you can’t think what the word is you are looking for you have simply forgotten what you are talking about. Beyond conversation, you can be thinking about something and realise that half your general knowledge seems to have leaked out of your brain. You can write something down and check it twice only for someone else to spot basic errors you would never normally make – when possible I always have my posts proof read for this reason. Apologies for the times I don’t, the errors you may find are the Fibro Fog speaking.
Irritable Bowel Syndrome (IBS)
IBS is a stand alone condition in its own right, one I was diagnosed with at the age of 16 when I was going through GCSE stress. (High School Diploma for my American readers) through most of my life since then, I have only been affected at times of extreme stress but since the Fibro began symptoms of IBS have been a regular feature in my life and seems to have no connection with any particular food group. Stress can still be one of the triggers but then an attack can be triggered by well, thin air!
Depression is another bedfellow of Fibromyalgia, I have previously talked about Depression at a time when luckily it barely featured in my life. Now whilst I am in a Fibro Flare Up it is another story, the key difference between Fibromyalgia Depression and standalone Depression for me is that the depression is caused by the Fibromyalgia. I think about my life before I had Fibro and all the things I could do and look at what I can manage now and I can’t help but be brought down. Most of the time I lift myself up with my creativity and my blogging which I truly love but when the flare up is at its worst I can maybe apply myself to something for about 15 minutes and then need a rest and that is truly depressing.
Anxiety is another condition that can run alongside Fibromyalgia. Again much like Depression, it is triggered by the effects of the Fibro rather than existing in its own right. For instance, for me, job security is a source of anxiety. There is a very real chance that at some point I may well end up losing my job due to sickness absence. The reality of a chronic health condition is that things can flare up at end time and you often have little control over this. No doubt this is the reason why many people with Fibromyalgia either don’t work or are self-employed which enables them to work when they can and rest when they can’t. I am at the moment trying to fight the anxiety of my situation but it is difficult.
My Less Obvious Symptoms
You will note I said “my” less obvious symptoms because there is a good chance that others with Fibro may or may not share these issues.
It is fair to say that this has been a long-term problem for me to a lesser degree long before the rest of the Fibro problems landed at my front door. I am not talking about a little niggle that goes after a quick scratch I am talking about itches that can drive you out of your mind nearly, that do not go after using a back scratcher (or preferably some else’s hand) until you are sore from the rubbing. When I am heading into a flare up I sometimes find that the itching intensifies, the only way I can describe it is somewhere between prickly heat and insects crawling all over your skin. I can never predict which part of my body it will affect either and without wanting to alter the tone – if it will be somewhere that can be scratched in public – just saying!
This also is far from attractive, I have to say as it is far worse at night (other than during the summer) I previously incorrectly put it down to the Amitriptyline but when I discussed this with the doctor they said this is highly unlikely because the Amitriptyline actually dries up secretions which is the reason why I often wake with a dry mouth. So unfortunately the sweating is not something that can be dealt with as a side effect but another symptom of the Fibromyalgia. To put this in perspective think of waking up with all the bed linen soaking wet, or to be simply sitting still on a chair and all your clothes are suddenly wet through with no exertion or change in the room temperature. Any ladies going through the change (I think without HRT?? – I have not got that far yet) you have my sympathies as I think this is a symptom we share.
What is this about? It mainly seems to happen when I am relaxed and unaware for instance if I am caught up in a good TV program and my muscles simply start twitching. It often happens in my jaw or my shoulders but can happen in any part of my body. When it first happened I think it gave Michael a bit of a fright as he thought I was having a stroke or something. Now he is more used to it and tends to say something like “twitchy much” this twitching doesn’t hurt, if anything I think it is my muscles relaxing which must be a good thing.
So what is Fibromyalgia?
To sum things up Fibromyalgia is a hotchpotch or many possible symptoms. So next time someone tells you they have Fibromyalgia the best advice I can give you is to ask them about it and see what this means to them and how it affects their life. Take it from me it means a lot when someone manages to reach beyond the label and begin to understand the reality of living with a condition like this.
Gentle hugs to all who need them,