I’ve joined a fantastic group of Chronic Illness Bloggers and this month we’ve decided to do a post across several of our blogs using a common theme. The theme for October is our Top 3 worst symptoms and what we do to try and help manage them.
If you blog about life with a chronic illness, I highly recommend joining the Chronic Illness Bloggers community. Not only do they provide opportunities for sponsored posts and product reviews relevant to our topics, I’ve learnt so much from the community about basic blogging and writing techniques.
Anyway, on with the post…
I can easily identify my top 2 worst symptoms (extreme fatigue and chronic pain) as they’re with me all the time. Selecting a third has been difficult. Anyway, after much thought and consideration, I believe my top 3 worst symptoms are:
- Fatigue (lack of energy) – I still don’t like the term fatigue but until I can find a better one it’ll have to do.
- Pain – Constant and continuous aching pain and more random stabbing and burning pains.
- Nausea – Not constant but when it hits it can be debilitating.
Over the last 3 years I’ve accepted that I’m not going to be able to cure my conditions and remove the symptoms completely. Instead, I am learning how to cope with them and manage them to minimise their impact.
I would say the constant fatigue, and the brain fog (Foggy Frog) that accompanies it, is the symptom that has the most impact on my life.
The frustrating thing with this symptom is that, until recently, I haven’t been able to stabilise it. Most of the time my energy levels were so low, and the fog so high, that I was struggling to function like a normal human being at all. Occasionally I’d improve and start being more active only to crash severely every few weeks or months.
Over the last 3 years I have tried many things to combat the fatigue (or at least minimise it). These include:
- Acupuncture – ended up helping the pain but not the energy levels.
- Diet Changes – has minimal impact on energy levels.
- Drugs and Hormonal Therapies – While using testosterone supplements, my energy levels finally stabilised and my number of energy (and mental capacity) crashes reduced. I’ve recently stopped all prescribed medications again so I’m waiting to see what impact that will have on my symptoms.
- Pacing – I talk about pacing a lot on this blog. I won’t go into detail here (you can read my other posts for that) but without pacing I wouldn’t be functioning at all!
Overall, I still haven’t found anything that improves my energy levels to any real extent. My coping mechanism for this symptom is just to avoid crashes and hope, that over time, my energy levels will slowly and naturally increase. Hormone supplementation and pacing are the two tools that work best for me in terms of minimising the impact of fatigue on my health.
My other constant companions, the Pain Gang, interfere with my life but over time I’ve learnt to just ignore any of the lower level, constant pains.
I have many more tools in my kit for managing the pain than I do for the fatigue:
- Heat – I use hot (or at least warm) baths and showers, wheat bags, electric blankets, and heaters. Heat works to release muscles that are clenching too tight. When I get cold, my joints seize up and all my other pains flare as well.
- Acupuncture – As mentioned above, I have regular acupuncture (every 3 weeks). This helps to release any tight muscles and can reduce my overall pain levels for up to a week after the session.
- Meditation and Hypnosis – Mindfulness meditation and hypnosis seem to help me cope better when pain levels are high.
- Low Dose Nortriptyline – I found that very low dose Nortriptyline (20 mg a day) seemed to reduce my pain levels as well. I tried several other antidepressants and anticonvulsant drugs. Some worked for a short while, but most had too many side effects or made no impact on my pain.
- Supplements – I take fish oil, magnesium, and calcium regularly. When I don’t my pain levels increase, especially the joint pains.
- Pain Killers (Panadol and Nurofen) – Although I don’t use pain killers regularly, I do use both panadol and nurofen during my period when the pelvic cramping is at it’s worst.
- Exercise – It’s definitely a balancing act, too much or too little and pain increases. These days I try to maintain my step count between 4-7,000 steps a day. I’ve recently added in regular stretching and aqua zumba classes at my local gym.
I have a very low level of nausea 95% of the time, but it only really increases and interferes with my ability to live occasionally. Right now my nausea seems to increase fairly often but luckily not to the point of throwing up. When I first crashed, my nausea made it impossible to keep anything down at all!
Because this isn’t something I deal with regularly I don’t have as many tried and tested methods for coping with it.
Generally I’ll take an increase in my nausea as a sign that I’m doing too much. I’ll try to find ways to step back and take time just to rest or meditate.
Ginger and Mineral water (or soda water) seem to help me out when I’m feeling nauseous. As does eating small meals more frequently and keeping up my fluid intake.
Do you have any tips for coping with nausea, pain or fatigue? I’d love to hear from you!