Since being diagnosed with Fibro, I’ve read and researched a lot of material regarding most effective pain relief and reducing symptoms. I’d like to point out here that, I don’t always take my own advice and there are times when I will do/take something I’ve read about or taken a while ago then stopped, and, think ‘why didn’t I do this before’! I have also found that certain methods which work for a lot of people, don’t work for me.
This brings me to an important point, Fibro is a very individualised illness, so what works for me won’t necessarily work for everyone. There are up to 200 documented symptoms, which vary in everyone and not everyone will have all the symptoms and it is so unpredictable that there is no pattern to learn from or prepare for. This being said, it would appear from testimonials I’ve read from other sufferers, there are certain symptoms that appear to affect most of them and myself alike.
- Pain – varying types and varying degrees
- Fatigue – constant fatigue, heightened by inability to/disrupted sleep
- Inability to tolerate heat/cold – causing pain, sweats, fatigue
- Depression/Anxiety – leading to fear of going out, loneliness (despite previous), isolation and unfortunately, suicide in some cases
- Stiffness – particularly first thing in the morning or when getting up from sitting for a period of time
- Cognitive difficulties – fibro fog (confusion, inability to think clearly or logically), memory problems, indecisiveness, confused vocabulary
- Increased Sensitivities – all senses can be seriously affected, for some noise or smell can start migraines, light can cause photophobia and migraines, reduced taste sensation and appetite and touch, sometimes the lightest touch can cause extreme pain
Other commonly documented symptoms include the following:
It is because of the main 7 documented above, that I have come up with 5 essentials to help alleviate the main symptoms that I experience, again, it might not suit everyone, but I know from experience, that I am willing to try anything!
My least favourite option as they can be (and certainly are with me) iatrogenic (causing unpleasant side effects) and because they are chemically produced (I’ll talk about alternative medicine in a later blog where I’ll discuss chemical vs homeopathic remedies).
However, at present, I am unable to cope without my medication.
Personally, I take: medication for Anxiety and Depression (1 magic happy pill taken twice daily) and I am not wanting to stop these yet as they helped my suicidal thoughts and plans, alleviated my depression and helped my anxiety, although I do still struggle with this; 4 types of painkiller, including a medicine for epilepsy! I’m not keen on taking these, however, it doesn’t take long for me to realise if I’ve not taken them (I do forget to take them on a regular basis (cognitive issues)); medication for oesophagitis; medications for vertigo and migraines, which don’t happen daily and; medication for duodenal ulcer, which I sincerely hope works as I do not want to have regular endoscopes at any cost!!
2. Heat pads
Another vital tool for pain relief. Heat application really helps alleviate pain, and I use it regularly for my pain. I have a variety of heat application sources, hot water bottles, electric foot warmer, microwaveable wheat bags and hand warmers as above. Not only that, I have a gas hob and a stove top kettle for if ever there is a power cut (I really do find heat is an essential aid) They vary in price, but I’ve always found them affordable and definitely worth it!
OMG, I cannot begin to tell you how much this has changed my life! Before my beloved chillow, I would really struggle at night with head sweats (partly due to menopause, I think). I would end up lying on the outside of the bed, with window open, desk fan on and cold wet flannels applied to temple and back of neck. All of this helped, but was awkward, the flannels would fall off or warm up or dry and I’d end up re-wetting them a few times in the night. Now I have my precious (said in a gollum voice), I find I can fall asleep a lot more quickly and I don’t have to get up in the night, as it stays cool. One of the best things about them is that they are sooooooo affordable and most definitely worth it.
It might seem like a strange item to list here, but bare with me. From my own experience, I’ve found that the weakness, pain and fatigue linked with the depression and anxiety is a recipe for disaster. Certainly for the first 6 months or so after being diagnosed, I didn’t go anywhere or see anyone. I was constantly thinking about what people would think. Seeing a fat woman, in her forties, struggling to walk, I could imagine comments along the lines of ‘look what she has done to herself, serves her right, costing the nhs because she eats so much, along with countless other judgements and insults. I couldn’t look people in the face and I certainly wasn’t able to explain to everyone that the weight gain was due to the undiagnosed conditions and I was doing everything in my power to lose it. I also felt I had to explain myself to everyone who I did meet, which looking back now, seems ludicrous.
Thanks to my interest in musical theatre (and the fact that I’d joined a year before diagnosis), I kept going, even when I didn’t feel up to it and I’m so glad I did. I find that singing lifts me mentally and emotionally and I am able to remember words and tunes, when I can’t remember certain words as part of a normal conversation. I feel alive when I perform and I have a purpose in life again and for me, this is crucial as part of my depression and suicidal contemplations were due to feeling totally pointless (when I was at my lowest ebb). I also find the little movement that I am able to do, is also good for me and I feel tired, but exhilarated when I have done it.
I’m not saying this is for everybody, as I know many people who would never set foot on a stage or performing or even singing, however, what I am trying to explain is that finding a hobby, something that you enjoy doing, preferably one that gives opportunities to meet and socialise with likeminded people is a good thing.
5. Family and Friends
As they say, last but not least, family and friends. I will discuss these ‘f’ words in more depth in a later blog as having the ‘right’ people around you is important and unfortunately, some can be toxic to our health and wellbeing. But, for now, I’ll cover the wonderfully positive aspect.
I am a very lucky person as I have a wonderfully caring family and incredibly supportive friends and it is because of these amazing people that I am able to write this now and share with you all. Letting someone be who they are, not expecting the impossible and not criticizing the fails is so important, especially with Fibro. Being there to soundoff to, to laugh with and to distract as well as all the other family and friends benefits can make it so much more bearable and I hope that you all have at least one person you can look to for this.
There it is, my 5 essentials, which I could not cope without and which I hope you all find useful. Please let me know either way and also if there are other essentials for you that you have found to work, I’m sure we could all do with more options x