This post is the first catch up on the patients taking part in the series of monthly updates. Please note that not every patient will always take part, to see their introductions and all posts related to this check out the following page: Patient Series
Every 3 months I will try and supplement this post with a second one summarising the experiences of each patient so far.
Every 3 months I will try and supplement this post with a second one summarising the experiences of each patient so far.
Patient 1:
1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?
The nodule in my left hand is growing, my little finger is contracting. Under my left feet the lumps are growing slowly. Walking more than 30-45 minutes is painful, can’t stand still for more than 1 hour. On a bad day every step is painful.
2.Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.
On a scale from 0 –10 the maximum pain is 8, minimum is 1. The average is 5
3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition
I visited the doctor for my right hand (6 weeks after surgery). My right hand is working as normal, no pain, no medication. This was the quickest recovery from the three operations they have performed on my hands. The operation for my left foot is scheduled. I am afraid there are no other options. According to the professor the operation will take 8 hours (microsurgery is involved)
4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
My right hand is working as usual without pain. My left hand is painful sometimes. The pain in my left foot makes that I can't walk very far or stand on my foot for a long time.
5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.
No exercises at the moment, I work 45 hours a week at the moment. Most of the time in the office, typing and working with my hands. Working outside 3-4 days lost month.
Patient 2:
1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?
No change since my last update.
2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.
My pain has increased but I have just had my first week of RT
3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost and how this has impacted the condition.
I had my 1st week of RT so my feet are very sensitive and are hurting more than normal. The hospital where I'm having it done are terrific and I get lots of interest from the staff as most of them have never had a patient that didn't have cancer. I start my 2nd treatment on January 5th.
4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
I am a co-founder of a walking group that trains year-round and my life is set-up that I can walk everywhere without having to drive. I've had to take a break from training with my group and will reassess what I'm going to do after my RT treatment. I've started driving everywhere or take a cab.
5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.
No diets, if anything I've been eating more, which isn't good since I'm not as active as I was before this. I've been doing lots of calf and leg stretching which seems to help before the RT but not as much now. but I think that's just because the RT has bothered it.
Please list any other information that you think would be useful.
I don't have anything now as I'm just working through this one day at a time.
Patient 3:
1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?
My hands have improved, the nodule and the cord on my left hand have softened greatly. The nodule is almost gone. No pain. My pinky finger on my right hand has more flexibility and can stay straighter. No pain.
The cords in my feet are not as hard, so they are softer. The foot cramping, while not gone has improved and I'm able to stay on my feet longer without having to sit down.
2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.
3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost and how this has impacted the condition.
N/A
4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
The only major difference has been using the phosfood. I started that around October 23rd. I also think following a ketogenic eating plan is also helping.
Patient 4:
1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?
My hands have improved, the nodule and the cord on my left hand have softened greatly. The nodule is almost gone. No pain. My pinky finger on my right hand has more flexibility and can stay straighter. No pain.
The cords in my feet are not as hard, so they are softer. The foot cramping, while not gone has improved and I'm able to stay on my feet longer without having to sit down.
Improved
3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost and how this has impacted the condition.
N/A
4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
The only major difference has been using the phosfood. I started that around October 23rd. I also think following a ketogenic eating plan is also helping.
5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.
Lol I've been trying to do some walking, but now my knee is bothering me! Hahaha can't seem to win:)
1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?
In the last month, I have noticed no change in number of nodules but the area of the nodules has hardened noticeably and widened slightly.
2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.
After one longish bike ride, I felt pain at about level 2 so no need for painkillers but I have only really felt discomfort not pain before. On average, I felt mainly discomfort this month although again for the first time, I felt discomfort when driving my automatic car with my LD (right) foot on the accelerator. An ice-pack eased my foot burning after the longish bike ride.
3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition
Same as last month really except less cycling:
(Since diagnosis, my lifestyle has changed as follows:
- minimal walking but more cycling
- very soft shoe inserts from my podiatrist as well as custom made orthotics (not for correction but for soft support under my nodules)
- instead of about 2 glasses of alcohol a week I now drink very rarely
- I used to take calcium supplements and glucosamine with chondroitin daily - I no longer do so
- I now take vitamin b6 and b12 supplements
- I have a small handheld ultra sound device which I use on both feet twice daily for 10 minutes
- I drink about 2 tspns apple cider vinegar diluted in a glass of water daily
See above for self treatment. - ultrasound and vitamins. I also stretch my feet and toes each morning before putting my weight on them. The ultrasound device was about $180 Australian dollars. The podiatrist I visit is cheaper through community health ($11.50)) per visit) and orthotics made free by her.)
4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
I have cycled less this month and so generally exercised less. With the hardening of the nodule area, I tracked down a Dr Grenfell in Bendigo which is some 200km away (rough guess on km) and received one email in response. He wrote a paper with Dr Borg on radiotherapy. I haven't heard back in response to another email I sent with questions.
5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.
I am afraid that I cycled less after I experienced a bit of pain post-cycle. (I must do better)
I have cycled a couple of times this month.
Please list any other information that you think would be useful
Still on HRT. Rather painful shoulder one day for no apparent reason and sore knees after a bike ride so I weakened and took a glucosamine which I know actually helps my knee problems.
Patient 6
1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?
Overall a decrease in pain
2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.
week 1 Cycled to work and from work (8 miles round trip) 3 days – decrease in pain
week 2 Cycled to work and from work (8 miles round trip) 2 days – still little pain
week 3 Saturday - Went Christmas shopping, increase in pain, couldn't get to sleep that night for the pain.
Sunday - Rested, pain moderate.
Monday - Went to work by car, had a walk out at lunch time, that night the pain was preventing me from sleeping. Tuesday - Went to work by car, struggling with walking around work and having to take extra pain relief.
Wednesday- Cycled to work, pain still bad, cycled home, that night the pain was between low and moderate. Thursday - Cycled to work, little pain and walking so much better.
3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition
Amitriptyline 20mg a day and codeine to take as an when to help with pain.
4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
As you can see from the answer above, there has been times this last month when the pain has been so bad it prevented me from sleeping and I was struggling to walk. I have started cycling regularly to work and back (8 mile round trip). Yet again proving that for me cycling helps.
5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.
Cycling has been the only exercise I have done this month.
I am continuing to eat smaller portions and have been losing 1lb a week
Patient 3:
1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?
No new nodules but I have noticed a fluctuating from day to day in softness and size.
2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.
Pain level is none in the morning maybe sometimes a 2 at night.
3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition.
Standard process phos food I take about 40 to 50 drops a day. By taking this I have my life back.
4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
Only distance walking is something I can't do, I was doing 5 miles a day and now only about a 1 mile or so
5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.
Still mild exercise compared to before nodules.
No diet change
Patient 8:
1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?
No new nodules but I have noticed a fluctuating from day to day in softness and size.
2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.
Pain level is none in the morning maybe sometimes a 2 at night.
3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition.
Standard process phos food I take about 40 to 50 drops a day. By taking this I have my life back.
4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
Only distance walking is something I can't do, I was doing 5 miles a day and now only about a 1 mile or so
5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.
Still mild exercise compared to before nodules.
No diet change
1. Nodule/nodules on left foot continue to change. They have a figure of eight contour and are increasing in size. Right nodule has stayed the same.
2. Maximum pain: acute pain 7/10 when tearing occurs
Medium pain: tolerable 4/10 aching.
Minimum pain: no pain when resting if I have not walked or stood for any length of time.
3. Have new insoles prepared by my podiatrist to reduce pressure on nodule but support the rest of my arch. No cost - National Health Service. The problem is getting them positioned in my shoes properly.
4. Impact on my daily life is pain after a busy day walking or standing. Trying to reduce the amount of standing and I am doing less walking. When I walk fast it produces the most pain so I am using my car more for short trips when I'm in a hurry.
5. I have not walked the dog daily this month but feel I should try to keep this going for health and fitness.
6. I feel that the colder weather increases the pain and aching in my feet. My main challenge is finding appropriate footwear. I have some trainers by Meindl which are great but need replacing. Really flat shoes cause discomfort. I have some new leather boots with a small wedge heel which are very comfortable. They seem to reduce the stretching which causes pain in my arch.
Patient 9:
1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed
No, though I did notice that whereas last year this time if I put the balls of by feet together the lumps on the arches almost touched, this year there is nearly a centimetre between them.
2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.
Very little pain.
3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition
Second pair of insoles still slightly less comfortable than the first pair, but not bad really.
4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
Little impact, though I find standing for long periods uncomfortable. Think this was true before the fibromas appeared though.
5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.
Flying to the Canaries tomorrow for a Ramblers Cruise and Walk holiday. Last year I had no orthotics, the lumps were hard and painful and I could do very little walking? I am hoping that this year will be different. More worried about my knees holding out!
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