I always recommend that CF patients follow the standard, approved CF treatments as prescribed by their medical team. However even with the prescribed treatments, I regularly experience ailments that fall outside of the normal acutely sick symptoms. Often it is a general lethargy or body soreness, with/without more coughing – but with normal blood results, no new bugs to treat, and no unusual explanation. For these things, I have benefited from the below remedies and gadgets that I use alongside all my regular therapies (never instead of):
1. Carrot, beetroot and greens juicing or juice powders for CF arthritis joint pain:
I found this food-based “remedy” 8 years ago, during a 2 year time of ongoing CF arthritis flareups. Steroids and anti-inflammatories were only helping temporarily and I was desperate. To my surprise my joints improved after about 10 days of drinking the juices, and the flareups slowly returned when I stopped the juicing. I tested it a few times to be sure. Since then I have been drinking these juices several times a month for years and while I still get general body aches, my joint flareups have almost disappeared. As I only use steroids when I have an active flare-up, I’ve been able to reduce the need for this.
I’m a bit lazy so I prefer to buy the practical but higher-priced dehydrated “juice powders” and then mix them with water or juice in a shaker. I tried a few different versions until I found a range with an acceptable taste. This is not an endorsement of any kind but just for reference, my favourite ones are from the AIM brand and I use the Just Carrots, RediBeets, Red Rush Nitric-Oxide boost (little bottles of pure concentrated beetroot juice), and their BarleyLife Extra. Google or search on amazon, I think they ship internationally – but I get mine from an agent in South Africa as I’m not interested in joining their network.
There are many health food companies that make similar products, just check that it is pure and full strength and and not just flavoured or diluted with other juices. You can of course create these yourself in a juicer, fresh probably is better but it is time consuming.
2. Hot baths for various ailments:
Heat really seems to help me: it eases the discomfort of joint pain and stiffness and gives me relief of almost any ailment I have, although the relief is usually temporary. Sometimes when I’m feeling under the weather, I’ll take 2-3 baths a day. I don’t know why it work (circulation?), just that it does.
3. Lecithin for mind clarity:
I started taking 2 soya lecithin (1200 mg) capsules a day for the same arthritis flare-up situation and while I cannot say if it helped my joints or not, I noticed it somehow made me feel much better so I have also been taking this for around 8 years. I’m just speaking from my experience here and it’s difficult to articulate the benefit…but I feel like it improves my mental state and clarity…If I stop taking the lecithin, I feel gloomy and less optimistic.
I don’t have a proper explanation, but lecithin is quoted to have many benefits and I’m guessing one of these just clicked with what my body needs. That or placebo effect. There is anecdotal evidence on the internet of lecithin helping others mentally too, examples below if you are interested:
Lecithin and relief from Depression (edu.udym.com)
4. Massage therapy for overall wellness:
I am very lucky to have a massage therapist-friend who is invested in my health, so I have been getting frequent full body massages for years. This are one of the things where I don’t notice an immediate benefit, but if I neglect the massages I start to feel it. With all the coughing and sitting, I get very tense back and neck muscles, and sometimes I get aching leg muscles for no reason. Another benefit of massage is that I often experience sinus drainage a few hours afterwards.
5. Foam rolling for body aches and stiffness:
I only discovered this a few months ago but I’ve been doing it almost daily as feels great afterwards and relieves the tension brought on by coughing and incorrect upper back posture. A foam roller is a large hard cylinder with a smooth or textured surface, made from foam and can be bought from fitness stores. You place it on the floor and then use the weight of your body to roll over it to create a massaging effect that you can control based on you position your body, e.g. on your back, on your hip flexors, shoulders and it also can be used for stretching. The rolling motion should be smooth and controlled.
Note: several people advise against rolling directly on your neck as it is dangerous, but there are specific exercises you can find like resting your head on the roller like a pillow and gently moving your head from side to side which will provide some neck tension relief. It is also not advised to roll directly on your lower back…but it is great for “rolling out” your mid and upper back and arching your upper back over the roller, in opposite direction of a slouched back.
You can search for ‘Foam roller exercises’ on youtube, but below are some links I watched that better explain foam rolling and some of the exercises that are possible:
(by Coral TV)
(by SittingSolution TV)
6. Fluriprofen patches for specific anti-inflammatory action:
I used to take ibuprofen regularly for its anti-inflammatory effect. But lately I have been getting more reflux (despite treatment) so my doctors advised that I reduce how often I take it, even though they do not think it is the cause, it can add to the problem. This is not a CF specific malady and rather a safer way to avoid oral anti-inflammatories: if I get a specific aching body part that I would normally take ibuprofen for, I have found it really works to apply a Fluriprofen topic patch like Transact before bedtime. I leave it on for 12 hours.
7. Amino acids and protein shakes for a less traumatic exercise experience:
After intense exercise my body can get so sore that I need to pop anti-inflammatories and I am in agony for at least 5 days (not exaggerating)…even when it is not a new type of exercise when one would expect to feel muscle stiffness. This makes exercise even less fun. Eventually I got fed up and did some research on muscle recovery from body building sites, as I figured they know a thing or two about this topic. I added some supplements when I train, and I can report it has helped! My muscle soreness is now at a more manageable, normal level.
The supplements I feel are helping include:
1) A powdered egg-white protein shake as I cannot digest whey protein, which gives me great stomach discomfort. Protein is necessary to build muscle, so sometimes I supplement with a protein shake if I cannot consume enough extra protein through my diet.
2) A post-workout branched-chain amino acids cocktail (BCAA’s are a combination of amino acids that are building blocks for protein in muscle tissue, necessary for repair)
3) I sometimes use another amino acid cocktail as a pre-workout, if I am feeling particularly tired. This does contain caffeine which you should avoid if sensitive to caffeine. I use something like these:
8. A wearable wrist fitness tracking device with heart rate for exercising sensibly
This thing is so cool that I feel it deserves it’s own blog review (which I might do). I recently got a Garmin vivosmart HR and I mainly use it to track daily steps; heart rate during exercise; and sleeping patterns. I easily overexert myself during exercise and can get frustrated with an apparent lack of progress. I finally found a much better and safer way to exercise: use the device to exercise at 60%-70%, or 70%-80% of you maximum heart rate. I can’t do math and exercise, so it’s great that it calculates it for you, based on your age and you just need to keep in the range it tells you to.
This means different things on different days – some days I can do a lot less and still reach my heart rate target, so then I just exercise at that safe, comfortable pace. The right pace allows me to complete longer workouts and enjoy it more. I also like to see the sleep patterns; it is not perfectly accurate but tells you useful metrics like total hours, how much movement during the night, and an indication of wake-ups, light and deep sleep. I think there is also a benefit to knowing your average heart rate, as it might alert one to a virus or other infection that may be brewing. It tracks a bunch of extra things like number of intensity minutes e.g. mine sets the goal at 150 minutes of intense exercise per week; alerts you when you’ve reached your step target for the day and so on.
I love that it doesn’t require an uncomfortable chest strap, that it just looks like a watch and that it only requires charging about once a week. I got the smallest size (regular) and my only complaint is that it is bulkier than a watch as my wrists are thin, but other than this I’m happy with it.
9. A handheld spirometer to keep an eye on lung function in between dr visits:
I paid out of pocket for this but since I got it, I’ve used it almost daily. It has been fascinating to observe a much greater variation in fev1 from week to week than I had expected (almost a 20% variation, where I would have thought 5%) I also definitely notice a correlation between feeling unwell on a specific day, and a lower fev1 on that day. Yes, this makes complete sense but I did not expect to see it so obviously. It also helps to check if the asthma component is under control.
10. Valeriana herbal tincture drops for stress and anxiety induced coughing (yes that’s a thing for me):
The drops smell like feet but they work! I use the occasionally with no ill effect, but beware these are herbal (not homeopathic) so only adhere to the advised dosage and don’t mix them with other meds for mental conditions, without discussing with your doctor.
11. 8 glasses of water a day for clearing thrush on tongue:
I drink a good amount of fluids but it’s not always pure water. When I upped my water intake to 8 glasses a day, I noticed an unintentional benefit: after 2 days, the white coating on my tongue I’ve battled with for months started clearing up, without any other diet change. And it cleared up dramatically: I started seeing big healthy-looking patches and a few days later it looked almost 100% normal. This was after no change from using prescribed treatment like Nystatin drops, and I do use appropriate antifungal treatment and probiotics during IVs. The thrush comes back when my water habit slips, so I’ve been trying to keep it up and have seen improvement again so for me this works.
Note: I have omitted the most common CF supplements and vitamins, as I figured those are already well-known.