Hi all,
Just resending my story: 070421:
1482 Draft 07 301220 Wednesday 2pm
Hi there all ye fellow wonderful brave Polymyalgiars. Thanks a million for welcoming me to your forum which has already lifted my spirits. I hope ye are all making progress in your battle to combat this debilitating energy sapping disease.
(301220 Wednesday:- I am inserting in here a brief synopsis of the good news at the start as this is a lengthy post. I have come a long ways in the past 3 1/2 years from at the beginning barely able to get out of bed in the morning to having difficulty dressing myself, walking with a shuffle and often using a stick for support to now being able to run up my stairs. I believe there is a solution to combating this disease but it takes dedicated daily hard work and resolve and further more I believe deep down we all have this capability no matter how low our situation is. I still get some fatigue it is much less now and I am still continuing in my efforts at further improvement so hopefully my story will be of some help in your efforts to get well. You will also see that the general trust of my “getting well” programme is not prescribed medication based. I am in no way knocking prescribed medication, Predniscone did the job for me at the start and I probably stayed on it far too long, and the only reason I am still on 50mg daily low dosage of macrodantin antibiotic for my UTI is I tried unsuccessfully 23 times in the past 3 ½ years to come off it )
Apologies for delay in posting my blog. I had to go back over my records to ensure as much accuracy as possible.
Anyway here’s my health story plus some brief background information which maybe relevant.
I am a fit slim 5’9” 57 kg 74 year old and widower since October 2016 with no children. I live in Ireland and I am making slow steady encouraging progress in my ongoing efforts to combat my UTI start 050517, autoimmune polymyalgia disease start May:June 2017 plus Raynaud’s disease start August 2018
(the PMR is the one of most concern)
using a combination of:-
1.Diet
2.Exercise (Aerobic & Resistance)
3.Cold Showers daily
4.Wim Hof breathing exercises daily
5.Meditation (Immune System online via my smart phone)
6.Positive attitude toward life
7.Prescribed medication UTI only long term low dosage of macrodantin 50 mg daily
8.Supplements
9.Prednisone for Polymyalgia Stopped taking it June 2019 after 22 months of gradually reducing daily intake. (Probably should have stopped taking it after 6 months)
Prior to Friday the 5th of May 2017 I was in excellent health physically and mentally and rarely did I visit the doctor.
I passed blood in my urine at 5 am on Friday the 5th of May 2017 and I went to the doctor that day. A week later I started a week’s course of antibiotics which I reacted very badly to, hot and cold sweats, stiffness, shoulder and leg pains, difficulty getting in and out of bed, dressing, rapid weight loss etc etc. These symptoms were most likely the start of the PMR. Another doctor from the same practice changed my antibiotics, (By the way as an aside about 18 months later when my UTI flared up, as an experiment I tried the antibiotics which I had a bad reaction to and they worked fine this time) I got some relief but short lived. My regular doctor put me into hospital mid June 2017 for 8 days where I spent circa 16 hours on a trolley in the corridor before getting a bed. (By the way trolleys are not that bad) A kindly orderly saw that I was in pain and organised a double pain killing injection for me which was great. A specialist eventually after seeing me in hospital 2 or 3 times and some post hospital visits put me on Prednisone for polymyalgia 2nd of August 2017 starting with 20mg daily tapering off to about 5mg months later. The specialist thought that the PMR might have been linked to the UTI. Most of you are probably aware that PMR is difficult to diagnose.
Within days the positive results were amazing from being barely able to put my arms over my head I could now reach my pull up bar and days later I could hold my own weight on the bar for a few seconds and within about 2/6 weeks I was able to do up to 25 swings on the bar plus hold a 120 kg barbell for up to 30 seconds.
In a short time at least one or more of the numerous listed side effects from Prednisone kicked in, in the form of extreme fatigue to the extent that I could easily lie down on the street and go to sleep. This fatigue would start around midday and last for many hours often up to late at night. I also experienced eye pressure, sparodic blurred vision light headedness and shoulder pain when about 15 minutes into a walk. My doctor would increase my prednisone from say 4mg to 7mg daily but it made little difference. Eventually I went off the Prednisone myself Mid June 2019 and I have been off them since. My online research indicates that the withdrawals from prednisone regardless of whether the dosage is low as in my case can last as long as the time you are on the prednisone. I was 22 months on this medication and I am now off them 18 months so roll on May 2021 but as most of you probably already know that medical data from the Internet while helpful is not an exact science nor is mainstream medicine. A niggling regret I have had is that I possibly should have stopped taking the steroids after being on them for six months and if I had done so that my recovery would be even more advanced at this stage. I have made some mistakes in my approach to getting well ie in July 2019 I was recommended a more or less full water, fruit and veg diet and the abrupt change of diet resulted in 40 days of severe diarrhea resulting in more weight loss to what I am now 57 kilos down from 70 kilos before all this started, so I have learned the hard (pun on the word hard) to not abruptly change from a standard diet to a mainly fruit and veg diet, but to do it gradually. A few months ago I was with my doctor and he seemed pleased with my decision to go off the steroids without saying it in so many words.
I also went to 3 different alternate medicine practitioners 2017:2018 and the third was bio resonance practitioner. I was with him from July 2019 to March 2020 , weekly visits. I had about 20 sessions of acupuncture with 2 different practitioners and I had monthly reiki sessions for about 2 years up to the Covid19 lockdown in March. I was put on a load of different supplements plus diets. I benefited to a certain degree from all of these but nothing major. Since the lock down I have been making further slow but steady progress. I still have fatigue but at a reduced level and it doesn’t last as long. I have trawled the Internet, youtube. I have to admit that despite much contradictory information on the net ref health issues I have learned a lot about the health business and how it works and there are no silver bullets when it comes to cures especially for autoimmune disease. Even so I have no intention of giving up and I am continuing in my efforts to conquer this disease.
Here is a synopsis of what I am doing to get fitter and healthier. Most of my fruit and vegetables are organic and I gradually eased into taking the below as well as my exercise routine, a process of trial and error. Note I would like to emphasise at this juncture that I am not advising anyone to do what I am doing, this is just my story and what I am doing to rebuild myself and improve my health. It’s hard work, requires loads of discipline and dedication but for me it’s worth it and even though progress is snail pacingly slow it’s definitely benefitting me. I believe that a lot can be achieved by adopting a positive attitude and when you fall down literally or metaphorically, pick yourself up again and again and never give up.
1.2 litres of water per day 2/3rds bottled and 1/3rd boiled mixed. Warm water is supposed to be better than cold water.
2.Fruit and water in the morning
3.First food:- Gluten free oatmeal 80 to 100 plus Grammes with 125 g of blueberries fistful of dried cranberries plus goats milk all around 3 pm. Ie apart from fruit no food until about 2 30 pm to 3 30 pm
4.500 ml of chicken broth soup, or 500ml of seaweed soup mixed with 200 ml of regular soup all mixed in with steamed vegetables, broccoli, carrots, celery, sweet potatoes, cucumber. Total volume of soup with steamed vegetables is at least 1 litre sometimes 1 ¼ litres if I am really hungry. In the soup mix I put turmeric powder, black pepper, extra virgin oil, spices such as oregano, ginger, cinnamon, and parsley. With that I have 4 pieces of gluten free wafer bread topped with either sardines, salmon or goats cheese slices. I now love this type of food and its great stuff. At around 10 pm while relaxing watching YouTube on tv I have at least a bar of dark chocolate 70% and I finish off with an organic banana which is supposed to help with sleep which I’m fine with apart from 2 or 3 nightly bathroom visits. The stuff I watch on Youtube is mainly about people who achieve and overcome adversity in life including people like Eckart Tolle, and many health videos, and I watch very little news. I am focusing on filling my subconscious brain with positive thoughts which is all part of my programme in trying to get well and beat this disease. I believe I am still only scratching the surface in my efforts and there more to be done and achieved.
5.That’s the gist of my diet and attitude toward getting well and “weller” I do however indulge (I’m not a complete Cistercian Monk) in a massive fry up once a month when I meet up with (Covid19 restrictions permitting) for breakfast with past employees of the company I once worked for. I also have a few cappuccinos and scones every so often when I meet up with people in local cafes but by and large my diet is reasonably consistent.
6.Exercise:- I do resistance exercises pull ups a little weights etc plus 2 brisk short walks daily. I also take a cold shower ranging from ice cold medium cold like warm finishing up with ice cold total duration 5 to 6 minutes. While this is torture especially if you have Raynauds like I have, the benefits are more than worth the discomfort. I am doing this about 18 months.
7.Prior to the cold shower I do the wim Hof 3 round breathing exercise which takes 15 minutes.
8.I believe in pushing myself within of course my limitations and a daily mantra I recite often out loud is a quote by Albert Einstein, “One should not pursue goals that are easily achieved but one must develop and instinct for what one can just barely achieve through ones greatest efforts”.
9.Supplements Vitamin C, coq10 high dosage, Vitamin D3 high dosage lately, (Note there are reports online that very high dosages of vitamin D3 are good for autoimmune disorders could be worth checking out and to liaise with your doctor for advice on same) glucosamine. I am taking these supplements from my own research apart from the glucosamine which I have been on for years.
10.I recite every morning the words “I am happy and healthy and I am free from the effects of all disease.” Plus many more mantras, Plus having gratitude for the things I do have rather than focusing on what’s wrong in my life. I also composed a little poem/mantra which I recite regularly and it goes like this. “Welcome to my bones Mr. Polymyalgia, I didn’t invite you but as long as you are here you are welcome. If you should leave my body unexpectedly I will not weep at your sudden departure but as long as you are here I will make you my friend. END”. I find that resisting what is, is counter productive and to try and welcome the rough with the smooth is more beneficial despite the seemingly irrationality of such an approach. (By the way its loads of fun doing what I am doing believe it or not.) At the height of my illness around May June 2017 when I was twisting and turning in my bed in the early hours drenched in sweat and my body racked with pain I laughed out loud at the thought of a week or two earlier of cycling up the very steep hospital hill and bounding up 3 stair flights to visit a sick relative and never feeling better to the sorry state I am in now which all came with no warning and so I worked on my acceptance that life can quite often suck and to embrace the good and the bad was the best approach as the alternative was much worse.
11.I wish all of you relief from your PMR and good health. Take care STRAPCOL. STRAPCOL is my own anagram which means ‘space travel and planetary colonization’ which I am an ardent fan of and a keen follower of Elon Musk who is making STRAPCOL a reality.
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