I know there are already threads on HHT and I have read through them, but wanted to post my own experience in an effort to recover from this.
I am 63 years old and during my lifetime I have been a runner, cyclist and swimmer. During the past 10 years I have mostly been cycling, as I found it too difficult to continue with running and also was able to enjoy cycling with my wife riding on our tandem bike. In December 2017 I was riding with a friend on a very hilly ride which is something I enjoyed, did often and was good it.
I was riding up a steep hill and felt some discomfort in my right hip. At the time it didn’t seem like a big deal but afterwards I was in a lot pain and found it difficult to ride for a few weeks.
Then it seemed to get better and resumed my normal riding, but one area on the side of my leg below my hip continued to hurt. During 2018 I saw 4 different orthopedic doctors which was not very productive because it was not an injury conducive to surgery. I went to PT for many months which also did not help and seemed to aggravate it. Towards the end of 2018 I received a steroid injection on the advice of one orthopedic doctor. It had no effect at all. I had read / heard about PRP injections and it so happened that there was a doctor nearby who specialized in this. I saw her and she did an ultrasound examination and diagnosed me with tendinopathy of the Gluteal tendons and told me that steroid injections are of no use. In March 2019 I got the PRP injections and was told that the pain would be worse from anywhere between a few days to 2 weeks. Well the pain was worse and lasted for 2 months. I resumed PT but this time with a different place that used a different approach. My doctor told me that I should start to see some improvement starting at 6 weeks and that full healing could take a year. I did not really start to feel a reduction in pain until about 3 months. I stopped going to PT because I started having other health problems that included various pain in both legs and my right heel which seemed unrelated to the tendinopathy and my doctor said it could be my brain spreading the pain to other places. I also had stomach problems that led to my weight dropping from 140 lbs to 126 lbs. By November 2019 the pain was significantly less, I could sleep on that side of my body which was something I was not able to do for over a year. I decided to start riding my bike and started out riding for 20 minutes. It went better than expected but I was seriously de-conditioned from not exercising for such a long time and the weight loss had devastated my muscles. I slowly and very gradually increased my riding time up to 2 hours with some very moderate hills. This was far below the level I had been at prior to my injury but I was extremely pleased that I felt I was recovering.
However, every time I rode there was a nagging tightness / pain in the area behind my left knee / top of my calf. I didn’t worry too much about it because it wasn’t bothering me that much and would usually go away at some point during the ride. But as I added more hills and started riding with my wife on our tandem, the pain got worse and eventually went into my left hamstring and buttock. In January 2020 I went back to see the doctor who gave me the PRP injection and after the ultrasound examination she told me that I now had tendinopathy in my left hamstring where it attaches to the sit bones. When I heard this I felt really depressed and wondered how did it happen because the entire previous year I did no exercising at all and when I started riding my bike in November it was very gradual and moderate. She told me it could have been due to my weight loss and de-conditioning. I also saw a sports medicine doctor and he confirmed the diagnosis. So I started PT again and stopped riding my bike. In March I stopped going to PT due to COVID and being in a high risk group, but continued PT on my own at home. I feel that I have made some progress in that the pain is not as bad and things that made it hurt before are less likely to do so.
I started riding on a recumbent exercise bike at the advice of my sports medicine doctor. I seemed to tolerate it ok and the pressure from the seat is more behind my sit bones, but it does cause some knee pain which I think is from the position. I worked up to 50 minutes using very light resistance and fairly high cadence. I tried riding my road bike on a trainer and put my wife’s saddle on it because it is very soft but found that it would aggravate the pain because I was sitting right on the area that is injured. Also I have been walking for one hour on alternate days. Even though I had made progress I still could not ride my road bike and felt like my pain was stuck at a level of 2. My sports medicine doctor kept telling me that I have to keep doing PT and get stronger before I would get better and that it was ok to have some pain from the exercises. So I stared increasing the exercises in number of repetitions and weight and it did make the pain worse. I decided to schedule a PT video visit with a therapist at the same organization as my doctor. I went over the exercises with him and told him what my doctor said about getting stronger. He basically disagreed with the doctor and told me to scale back the exercising and that I should avoid pain. He also advised that I should start doing some stretching. I strongly objected to this and told him everything I had read said that stretching is bad for tendinopathy to which he replied that is not true if done properly and gently. So I followed his advice and reduced the strength training and started doing some stretching which did seem to help. I still have a lot a variation in pain from day to day and hour to hour and not always sure what accounts for it, sometime it actually feels better after exercise. Since I wanted to get on by bike having stopped in January, I decided to order a custom saddle molded to my rear end (Meld). It was expensive and knew it would be a long shot. It took a month before it was ready and now I have been riding on it for a few weeks. It is very firm and supportive and am still playing with the positioning. I rode for 10 minutes on my first ride and have gradually increased. Yesterday I rode for 30 minutes. There is still pain on my left sit bone because I am still sitting on the injured area but I feel because I am riding on top of and not sinking into the saddle and the shell is quite flexible being made of thin carbon fiber that it might as good as any other option. I have been able to tolerate it and not make the pain worse so far. I was considering getting a PRP injection since it seemed to help with my last injury. But in April of this year I suffered a heart attack and now I am the proud owner of four stents. I have to be on aspirin and blood thinner medication for one year. This disqualifies me from getting a PRP injection. So the soonest I could get it would be next April. I am hopeful that I will continue to improve although it has been painfully slow and non-linear, and that I will be able continue riding my bike. If I can make it to one hour I will probably just keep it there until I feel the healing is further along. I would like to go back to PT in person, but I don’t see that happening until there is a vaccine for COVID that is proven effective. Sorry for writing which seems like a novel, but wanted to include all the details. I don’t know why I keep getting these injuries and it has caused havoc with my life and well being. I think it must be getting old and various medical conditions and genetics. At this point I am wondering if there is anything more or different I can be doing to hasten my recovery. I welcome any suggestions and advice.
Thanks for reading - Joel