Frozen Shoulder – A Patient’s View
My first shoulder started freezing at the end of 2020 and I had no idea what was happening. At the time I was visiting my husband in hospital every day, so just assumed my shoulder was stiff from sitting in the same position and not moving it as much. When I started getting the shooting pains down my arm, was struggling to get certain clothes on and was getting more achy, I knew something was wrong and spoke to my GP. Luckily they had a physio who was able to diagnose me and prescribe me a course of physio to help. No one really knows what causes a frozen shoulder, but after discussing with various people and some reflection, mine were definitely due to the intense stress I was under at the time.
There is a lot of information online about frozen shoulders and what it is, but actually not much on what can help, apart from physio and steroid injections. And I have read a lot! So I thought it would be helpful to write down everything I’ve tried and what worked to help anyone else in a similar position.
Accept you have a frozen shoulder
This seems like such a simple thing, but when you hear that there are 3 phases to a frozen shoulder (the freezing, being frozen and the thawing) and it takes on average 2 years to recover, there can be a degree of denial about what is happening to you and your inability to do day-to-day activities (i.e. getting dressed, lifting anything of any weight, getting a jar from the top shelf of a cupboard); it’s easy to pretend this isn’t happening. The best thing I did, for my mental health, was to accept I had a frozen shoulder, that I would not be able to do some things for a while/need help with some activities and that it would get better eventually. I think this is especially important during the ’freezing’ phase when you’re in constant pain and struggling to sleep. My poor husband and physio, I cried so much in the first few months.
I did stretches and mobility exercises throughout my frozen shoulder journey. I honestly can’t remember how much it helped during the freezing phase (it is supposed to stop the lack of movement getting too bad), but it definitely helped during the frozen and thawing phase. Now, doing arm/shoulder exercises every day at home or at your desk can be tedious and boring and sometimes you forget because you’re so busy. Don’t beat yourself up if you miss the odd day or don’t do all 5 exercises one day; just get back on it again when you have the energy and motivation. I’ve had various moments where I felt too tired or just didn’t want to do them, so I could feel ‘normal’ and I definitely didn’t do them on holiday. But when I felt motivated and had slept well, I would get back to doing them regularly again.
I think physio is really important, as they can move your arms in ways you can’t and help stretch them to your pain limit, which does help open your shoulder more. Even though I feared the moment my physio would say ‘I’m going to do some muscle release now’ because I knew it would be intense and sometimes painful, I also knew it was helping me in the long run.
Because you don’t use your shoulder or your shoulder/arm/back muscles for such a long time, you end up losing a lot of strength. So when you can, building this back in again also supports recovery. I waited for my physio to guide me in this so I knew what to do, but also when to stop if needed.
Pre-frozen shoulder I liked to run each weekend and do yoga each week (usually sessions on youtube), but I couldn’t do either of these when my shoulders were frozen. However, when my shoulders started thawing, I found yoga really useful. Not only is it good for relaxing your mind, but it helps stretch your arms/shoulders and overtime I could see the improvement in my movement/stretches, as my shoulders recovered.
I was one of the unlucky people that had both shoulders freeze (this will happen for 1 in 5 people who have one shoulder freeze), one after the other, so I ended up having steroid injections in both shoulders and had the experience where it helped with one, but not the other. If you’re scheduled to have one, you’ll be told that the first 48-72 hours after an injection in your shoulder it will continue to ache and sometimes more than you’ve experienced, but then you should become pain free for several weeks. This is what I had with my left shoulder and it was bliss for those weeks. But for my right shoulder, I had no pain reduction whatsoever. I know I could have gotten another injection to see if it worked, but by that point I was on effective painkillers. However, I would recommend getting a steroid injection when your shoulder is first freezing, to see if it can help.
When my right shoulder froze too, my GP referred me to the local hospital for additional treatment. I was offered the following options: do nothing and wait for it to heal naturally, steroid injection (I did try that first), saline injection or surgery (they put you under and force your arm and shoulder open – no thanks!). I opted to try the saline injection. The idea is they inject anaesthetic to numb your shoulder, then they inject a high volume of saline into your shoulder joint, which expands the shoulder capsule. The saline is actually absorbed by your body over the next 24 hours, but the idea is it has stretched the shoulder capsule enough that it speeds up recovery. This did help me. I noticed at my next physio session that I was able to move my shoulder more than previously. Apparently you can get a series of saline injections. This wasn’t offered to me, probably because of the COVID impacting everything, but if it had been I definitely would have done this because of the benefit it had.
As anyone with a frozen shoulder knows, the constant pain is awful. It stops you sleeping, it stops you doing some activities and it is draining, impacting your mental health. This pain gave me an idea of what people with other chronic conditions and chronic pain go through and I really sympathise with them, but thankfully pain from a frozen shoulder is temporary.
To help with pain relief I tried the following: 1) heat packs/hot water bottle – this can give some relief, but only temporary. The best, if you have one, is to have a bath. As the heat numbs the pain while you’re in it. 2) pain killers – I tried paracetamol, ibuprofen and cocodamol (all over the counter). They did not work. I also tried naproxen with cocodamol, but this didn’t work. I just needed the edge taken off the pain so I could sleep and get through the day without crying. Waking up 2 hours after you’ve gone to sleep and realising your shoulder hurts too much to get back to sleep and that you can’t have more painkillers for another 2 hours, was very distressing in the early hours. In the end 30mg codeine prescribed by my GP worked for me. It took the edge of the pain, which meant I could focus at work and could get more sleep. My GP was great, in that they understood my situation and worked with me to find a course of treatment that helped. But with how difficult it is to get appointments, I know this can be difficult. Persist with them, because it’s worth it when you’re going to be in pain for a number of weeks-months months.
This was the hardest thing for me to deal with. I couldn’t sleep on my side because it hurt to have the affected shoulder hang forward and I couldn’t lie on the affected shoulder because that really hurt. So I had to lie on my back, which I never do and do not like. For me, CBD oil was life changing, particularly Blessed CBD oil (UK company). It’s important to state this brand, because I tried many other brands of CBD oil and gummies and none of them worked. I used the CBD oil at night, when I went to bed, using the number of drops stated for my body weight and placed it under my tongue. I went from getting 2 hours sleep per night to 4-6 hours. I wouldn’t have gotten through the initial stages of a frozen shoulder without it. Some people have found CBD gel/cream good for pain relief too (my friend said it was great for her back), so I tried some on my shoulder, but it didn’t work for me. But if you’re that way inclined, a joint on a Friday night if you’ve had a painful/sleep-deprived week, is also great for taking the edge off the pain and getting a better night’s sleep.
A big pillow also became my new friend, as I could hug it or place it under my forearms when I was lying on my back, which took the pressure off my shoulders and made it slightly more comfortable to lie down. When I was in the thawing stage, it still felt awkward to lie on my side as I didn’t have all the shoulder movement back, so propping my arm on the pillow whilst I lay on my side really helped.
Music helped too. When I woke up during the night and couldn’t yet take more painkillers, my mind would go crazy focusing on the pain and not getting better, which obviously isn’t healthy. Putting some music on helped calm me down and become more restful, even if I didn’t always get back to sleep. For some people podcasts have the same effect, so would recommend trying this.
I also tried lavender oil on my pillow and tiger balm, but I’m honestly not sure these did anything other than smell nice.
Managing at home is one thing, but work is another. You should speak to the occupational health department if you have one, as they can help put some reasonable adjustments in place to help while your shoulders recover. However, if you don’t have one or they are particularly useless (like mine was in my last job), speak to your manager about what you find aggravates the pain and what helps keep it at a low level.
As I sit at a desk a lot, having a chair with armrests was very important, as it meant I could take the strain off my shoulders throughout the day. I found using a computer mouse really aggravated my right shoulder, so a wireless one might be better or talk-to-text software. I’m a scientist and so have to wear a lab coat, but these became difficult to get on due to my limited movement in both shoulders, so for me, a large coat and loose clothing was the way forward. I once tried to wear a fitted jumper dress for work and at the end of the day I had to ask my husband to remove it, as it got stuck halfway and I didn’t have the mobility or strength to pull it the rest of the way over my head. And don’t even consider sports bras as a woman, unless it fastens in the same way as a bra.
Many people suggested acupuncture to me to help my shoulders. And now that I have found a great practitioner, I strongly recommend this as an option if you can afford it or get it on the NHS. My first experience, however, was awful. I went to a local acupuncture centre that focuses on the whole body (regardless of your condition) rather than focusing on the area affected. I have been told by different users of acupuncture that if it is going to work for you, you will notice immediately after your first session. This was not my experience. I had massage, cupping and then some acupuncture, with needles in my belly, legs, arms and chest, but with no improvement. And then they tried to get me to sign up to a course of 10 sessions even though it didn’t work. So don’t get sucked into this time of place!
However, I wasn’t completely put off and contacted another acupuncturist based near me, who advertised acupressure massage, deep tissue massage, etc. I initially went for an acupressure massage (which was unlike any massage I’ve ever had), that focused on my shoulder, back and chest muscles. It was painful, but I felt like I had some relief. After some chat, it turns out she used to be an NHS physio, but is now focused on yoga, massage and acupuncture. So I tried acupuncture with her and she put the needles into the muscles around my shoulders, back, neck, etc and it worked. I felt relief after each session and more ‘free’. Because it made a difference physically, it also helped me emotionally. The only downside is I’ve not been able to go as much as I would like, but I would definitely recommend it.
My last bit of advice, is to be kind to yourself. Dealing with a condition like this will impact you physically and mentally, so if you need to, take one day at a time.
Written by Surrey Physio patient: HS, aged 37