If you found a treatment that reduced your most challenging symptoms, are there any changes you would be prepared to make, including a change in habits or your environment to help maintain that improvement?
Please respond by replying to this post!
Thank you in advance for sharing your thoughts 😀
Anna
yes for sure
I have been doing that since diagnosis, initially researching for myself and then getting to a point where there was no further improvement.
I am now seeing an Ayurvedic doctor, this has required quite major changes to my diet and lifestyle but the upshot is a massive improvement in wellbeing
Yes.
Yes. I have had to make changes in my lifestyle just to manage and try and reduce pain as I'm sure most people with fibromyalgia have. So to make changes for a treatment that reduced symptoms would seem a natural way to go.
I have already changed my diet and paid to see a Homeopath - but I have a Prayer Card in the house with 20mls of LOURDES WATER which is my last hope
Thank you for taking the time to share your thoughts on this topic.
I became a smart phone owner in order to use a Kardia and show that I did, indeed, have paroxysmal atrial fibrillation and so obtained a prescription for Flecainide which has kept it in check most of the time since. Sadly, the fatigue I also have has vastly reduced the active life I used to have as I can no longer walk anything like as much as I used to do. I have always had a healthy diet with lots of fruit and veg, in small meals which must explain why I am not troubled by a large gallstone it appears I have. More recently diagnosed with a hiatus hernia, I have had to stop eating citrus fruit which I used to enjoy but have lots of other fruit which hopefully is not acidic! At 79 I guess I am in the “bonus years” and able to enjoy much of life still!
Thank you for sharing your lifestyle habits to help your symptoms. You sound so positive about the things you are going through, very inspirational! Do you have a new favourite fruit now?
I don’t eat fruit etc to “help my symptoms” but because I have always liked fruit but now have 5 prunes with other fruit with morning muesli and prune juice with lunch sometimes to help with the constipation that seems to be a side effect of Flecainide as well as adding to my fatigue!
Absolutely I would
I am what is called a "one off" I have been told we can not do nothing more for you, even had my epilepsy specialist and me shaking hands on it! The number of times in A&E in hospital, Drs, nurses etc, "Groan!" when they see my medical cv, or walk out of the room or ward, with the cv, a "Groan" on my part as well! Especially the "Schwannomatosis" the finger pointing at it "What's that?" [I have got a set description prepared somewhere?] My new Health centre has been especially patient with me, various tests, blood, urine, scans, appointments for MRI's given to me regularly. I am terminally ill with my epilepsy, irreparable brain damage. They and I know not much can be done for me, but it keeps everyone happy!
Hello Adlon57, thank you for taking the time to talk about your experiences. I hope that HealthUnlocked has given you another avenue of support.
I am really trying to change habits! That requires consistency for 21 days or more. My habits are getting in the way of 21 days of consistency.
Thank you, Julie729, for sharing your experience. We have just posted another question asking:
If you could choose which symptoms you struggle with the most to improve first, what would they be, and why?
You can answer this post here; healthunlocked.com/research...
I had to make changes in order to keep working long days for 10 years. Tried to exercise but have now had both hips replaced and am struggling to regain any level of fitness.
I would consider drastic dietary changes but partner not very supportive ( we do eat pretty healthy Mediterranean style diet anyway).
Now I have been retired for 7 years I had hoped I would find myself far healthier than I am. Instead I still feel burnt out and extremely old. Awaiting another hip surgery in a couple of weeks, will try again to get back to 'normal'.
I ate the 'right things', did lots of cardio exercise, BMI of 23. My warm down after exercise included yoga shoulder stand, plough, candle etc. If I could go back, I would argue with the EP who said an anticoagulant was unnecessary and, I wouldn't do inverted yoga poses that stressed the carotid arteries. The stroke caused a permanent visual disability (hemianopia) that means my driving licence was revoked. The change I want to see is the DVLA Medical Group using an opthalmology consultant, instead of non-medical case workers and a former A&E consultant. I see that the Secretary of State Honorary Medical Advisory Panel on driving and visual disorders now has Dr Claire Howard and Dr Lauren Hepworth for whom I have the highest regard in stroke related visual disability.
Thank you, John-boy-92, for sharing your journey with navigating your health symptoms.
If I was single I would try a plant based diet, but in my present situation that wouldn't work.
The symptoms of Behçet's disease began in 1985. Behçet's disease was diagnosed in 1987 at Istanbul University Capa Medical Faculty. I have erythema nodosum and pseudofolliculitis in my body, sores in the genital area and many aphthae in the mouth, the drugs given for treatment have never improved my complaints. In 1988, I used the extract I prepared myself morning and evening. I went to the faculty that diagnosed my disease, but I could not convince the doctor. I had correspondence with pharmaceutical factories. No positive response came from them either.
This is my biggest challenge! I innately don't want anything to change, but the reality is everything has to change. I HATE crying, "Uncle!" However, it's becoming unbearable to keep on keeping on. I need to change where I live, in what type of house or apartment I live in, with whom I live (husband...), my pets, my work, my last activity I enjoy, my eating habits, my sleeping habits, my social life! I have been fighting the battle valiantly, but 9.5 years after resection, my tumor site is yelling loudly at me again, and a laundry list of complications we are all familiar with are coming to a head, no pun intended. I don't want to give-up, but I want to stop fighting and focus on some pleasure too. So far I haven't been able to do that. I'm obsessed with leaving things clean & tidy, and mostly "paid for" before I go for my family's sake. It's a task I may not be able to accomplish, but I want to keep trying. This year I am seriously doubting my abilities to do some of the essentials, so I'm scared, but I never let that stop me before. I like swimming in denial. I guess pleasure isn't essential to me.
Absolutely
It’s something I’ve been trying to do since last June. There is little /no help available for an adult who lives alone and has as yet uncontrolled tonic clonic seizures (me). So I’m trying to streamline my home so that there are less dangers when a seizure happens .
I’m about to have a lock box fitted which may mean I will be able to access a monitor thing for my bed in case of nocturnal seizures and a fall alarm since my Apple Watch has been useless in that regard.
I’ve stopped weight training on the advice of my neurologist & stopped jogging because of obvious to me risks That’s impacted massively on body image and lack of choice /control of my own body .
Besides those, I would change literally anything to have more managed epilepsy. The only thing I’d not do is the ketogenic diet since I’m vegan and taking a certain medication has caused a huge amount of added stress already in that regard.
My planned trip to a Scandinavian country .is cancelled since the best holiday insurance quote was over £7000. I’m instead going to the most remote Scottish island I could find where the second worst case scenario is an air ambulance to the mainland. It’s obvious what the worst case scenario is. (It’ll be my my first “holiday “ for 13 years).
I don’t know what else I could change, other than moving home (I’d love to ) to somewhere safer but as a social housing tenant that’s extremely unlikely.
Life goes on , but it would be nice if people had the ability to choose and access whatever support they needed.
Most definitely, I've been having physio therapy for my shoulder and though it hasn't eased the pain it's given me much better movement. I will be continuing with the exercise regime even though my physio sessions have come to an end.Because I have CFS and Chronic migraines I have very limited energy but I prioritise the physio twice a day which often means other things don't get done
💬 Discussion Topic: What are the most critical aspects of patient experience that should be considered in healthcare research?💬 Discussion Topic: How does your health condition impact your mental health?💬 Discussion Topic: How does your background or how you grew up affect how you think about healthcare?💬 Discussion Topic: Are your mental health needs being met by your clinician or healthcare provider?💬 Discussion Topic: If you prefer alternative healing practices to Western medicine, does it affect how you use the healthcare system?
