I'm suffering from a shoulder problem since about 2,5 years. I have asked my GP, a rheumatologist, internist and finally a orthopedic doctor about it. They all say it is frozen shoulder. I followed several physiotherapies, and had chiropractor treatment but with no result. It started 2,5 years ago with subtle limitations in movements with my shouder/arm. That got worse through the years. I am a side sleeper and sleeping both on the painful and at the good shoulder causes pain in the painful shoulder. Since one year pain even developed when sleeping on my back. I now have so much pain my sleep is extremely troublesome. The hospital has planned a Pulse Radio Frequence nerve blocking treatment for me on Jan. 15. I am a bit afraid to take this treatment.
First because I doubt if the diagnosis frozen shoulder is correct. I do not recognize my pattern in the description of the frozen shoulder pattern. I do have the same limitations in movement, but I only have pain when lying backward and lying down and when moving my arm further than the current range of movement. Parallel to the arising of the shoulder problem 2,5 years ago I noticed a very hard lump at the location where the clavicular and first rib meet the manubrium/sternum. Echo and röntgen show a calcifcation there, but all medical people tell me there is no link with that calcification and my shoulder problem. I do have hypothyroidism and diabetes type 1 and am female 52 years old, all risk factors for frozen shoulder. I have been tested for TOS (thoracic outlet syndrome, for nerves and arteries/veines) but that seems not the case. The pain goes down to as far as my thumb and I have developed two cysts, one on my inner pulse and one on the MCT joint (in the arch between thumb and index finger). I also have Dupuytren's and osteoarthritis looking fingers but no evidence of the latter on imaging material.
Second I am afraid of possible long term complications of the RPF treatment.
I would very much appreciate to learn if anyone who has (had) shoulder problems like mine, has (had) another diagnosis and what treatment helped.
Also it would help me a lot to read experiences of others who had PRF treatment, for shoulderpain or other condition. What the results are/were, and if there are/were short and/or long term side effects.
Thanks!
Written by
Jocelin
To view profiles and participate in discussions please or .
I have frozen shoulder - two actually and the first was diagnosed properly by a consultant I saw under my BUPA insurance. Before I saw him I was told by two different GPs that it was shoulder impingement/rotator cuff problem. My new consultant agreed that thyroid problems are a risk factor and asked what I had done to help it. I gave him a list of physio, chiropractor, exercises etc and said that they had all made it worse. His answer was “Do nothing”.
Since then I read on this site about infrared lamps and immediately bought one. The shoulder began to get better and is now almost back to normal. Unfortunately the other one then started, which apparently is common and so I am doing the infrared lamp whenever I can and hoping it will eventually start to heal. My advice is do no specific exercises and immediately buy a lamp.
Which sort of lamp do you have? I have had this sort of shoulder pain for years. I have had every sort of treatment but not infrared...perhaps you could pm which one this is?
I’ve Heard the infrared light is good for hypothyroidism in general - as well as many other maladies. What kind of infrared light did you get specifically wave length?
I put the infrared machine on a table of the right height or use something to raise it if necessary or some other work top and then I sit with my back to the machine and slightly to the side so heat hits the shoulder. Then swap to do the other one after allowing the machine to cool down, as instructed, or give each shoulder just ten minutes each. Hope that helps.
Hi JocelinSorry to hear about your pain. pain is one thing and not being able to find the cause is worse. I wonder whether an MRI of your cervical spine will be helpful. Good luck.
About 3yrs ago I developed a shoulder impingement/rotator cuff problem. I was doing repetitive work (mucking out stables), I was also woefully not treated for my hypo and would often find myself at greater risk to injuries, either because of exercise or repetition of movement or nothing at all, there didn’t seem to be a link, except that I was not optimally treated for Thyroid.
With my shoulder the pain gradual worsened over 2/3mths and the movement of that arm decreased. I then had to stop working/using it all together, I couldn’t raise it further than a few inches of my thigh by that stage.
I had to stop using it completely for 6mths, it was my right shoulder, I’m right handed, it was a complete and utter ball ache! 😩
I was lucky, I was able to stop work and had the time and extra help at home to do chores. I’m not saying I complete rested it because however would that work? But I never attempted to raise that arm for 6mths.
It took another 3mths with gently using the arm again to finally be ready for physio. I had 6 session and exercises to complete in between. The physio would massage my back and shoulder so so deeply. I remember a GP sitting in on one of our sessions as they wanted to understand what kind of service they’d be referring patients for and I was laughing and giggling with tears rolling down my face. The GP asked the physio what’s going on and the physio said that sometimes the pain is so much that patients laugh. I confirmed that yes the pain was immense!
I used naproxen regularly for the pain and something at night that was stronger, I’d get a good nights sleep but I’d be so ‘off my face’ all day that I thought I was a danger to myself and certainly couldn’t drive or be very responsible for my kids.
Recovery took about a year and half to 2yrs in total. I can rotate my dark now but it feels really uncomfortable and grinds and clicks.
Being optimally treated is vital to lessen the chances of injuries and for more swift recovery. Since being optimally treated I’ve not had any injuries. Also with hindsight I would have stopped/limited all movement of that arm much much sooner. Looked at my vitamin and mineral levels and also used magnesium cream on the area.
I think I would keep investigating/ researching if I were you but also start restricting your diet, test Vits and mineral levels and not use. The affected arm/shoulder at present.
I had frozen shoulder. I found an electric underblanket sorted it, the type you can leave on a little while whilst in bed. A mattress is a massive heat sink - try lifting one! I found that when going to bed the mattress was drawing a lot of heat out of my body for quite some time. It took a few years but the frozen shoulder has completely gone now.
I don't think this is the only cause, certainly hypothyroidism plays a big part. Finding some way of ensuring the bed it warm before you get in it will stop the heat loss problem. The mattress really does suck a lot of heat out of your body.
very similar situation - actually stemmed from the neck. Had intensive deep needling by a very qualified physio and neck manipulation - worked a treat. Prior to that I had had steroid injection 5 years prior but it eventually came back - steroids deteriorate the ligaments so i needed to find another way. Deep needling is not for the faint hearted but it worked for me.
My left shoulder became impinged and then my right. Its agony as you know. I had steroid injections in my left but pain only left for a couple of weeks. Stands to reason to me that injections must cause some damage. I had physio but it didnt help. They wanted to operate but I thought Not Likely! My job as a CPN involved a lot of driving and I think my movements in the car exacerbated the pain.
I sold my car and bought an automatic. My shoulders started to resolve immediately.
A couple of years later found I was hypothyroid. They will do any test and treatment other than treat an underactive Thyroid! Shame on the medical profession. They never checked it though I had other illnesses and Shingles twice.
My right just hurts a little now but I have full movement and the left shoulder is all better, full movement and no pain.
Can you identify any movements which make it worse? x
I'm sorry I don't know anything about PRF and I hope someone comes along who does. But I share your pain, literally, as I too have been dx'd with FS.
First because I doubt if the diagnosis frozen shoulder is correct. I do not recognize my pattern in the description of the frozen shoulder pattern.
I share your frustration about this. My FS is secondary and atypical, so I don't 'fit the pattern', either. However, for as many people who do fit the freezing/frozen/thawing pattern, I gather there are many who don't, so it's a limited model. Has anyone proposed hydrodilitation? I know some people who've had immediate relief from that. But it might need to be an earlier intervention to be effective. Some of the therapies that can help with pain management are or may become difficult to access because of COVID-related restrictions. I hope you find something that helps.
Hi, I can’t help with the medical stuff, but my shoulders hurt when I lay down too. I see an osteopath who is very understanding and she makes sure the muscles are not too stiff around that area.I sleep on my sides more too. What I have found is that using v pillows helps.
I have one normal pillow, then put a v pillow a bit at an angle. You can put your shoulder into the gap and that takes the pressure off.
I occasionally use 2 v pillows and sleep a little more upright, but I do that because I get migraines and that really helps keep those down too.
You could give it a try, you can get them fairly cheaply on Amazon etc.
Get the ones that are not too stiff and can be easily squished together.
(I bought one from John Lewis, it’s great quality, but no good for supporting my head when lying on my side)
The GP did nothing - sent me to physio - was rubbish.
Now I know it’s probably connected to my hashimoto’s I just get on with it myself.
I was finally (after 14 months) diagnosed as having Frozen Shoulder. It started in my left shoulder and then my right shoulder. My left shoulder started to improve after about 6 months and is now virtually pain free but not as flexible as it used to be. However, my right shoulder (I am also right handed) is really painful and I have limited movement. I also have rotator cuff impingement and one partial and one full tear in supraspinatus tendon. I totally understand and sympathise with your pain and the frustration of not being able to sleep.
My GP thought I had fibro/rheumatica and referred me to a rheumatologist. The Rheumatologist said I had rotator cuff tendonitis and gave me a steroid injection which had zero effect. I was then referred to a physio, who used acupuncture, electric shock treatment, ultrasound and exercises to do at home. The physio finally diagnosed frozen shoulder and referred me to an orthopedic surgeon, who confirmed frozen shoulder.
To cut a long story short, the orthopedic surgeon has suggested in the first instance Hydrodilation. I am waiting for the clinic to contact me with an appointment. If that does not work he is going to manipulate the arm and shoulder under a general anesthetic and if that does not work, I will be offered keyhole surgery. Finally, I was offered the option of carrying on for another year or two to complete the "Freezing, Frozen and Thawing" scenario.
I hope your appointment goes well on 15th January, please post on the forum to let us know how you got on. Once I get my appointment for Hydrodilation, I will post a message. It seems frozen shoulder is common for those of us with auto immune disorders.
Bilateral frozen shoulder must be terrible. I'm sorry you've had such a rough time. It's difficult, isn't it? Hydrodilation can bring immediate relief. It didn't work for me, but I hope it helps you. If you ever consider having a procedure, you might be interested to read about the UK FROST trial, which compared outcomes of MUA (Manipulation Under Anaesthesia), ACR (Arthroscopic Capsular Release), and physio with steroid injection.
Thank you, HKAnne. Unfortunately, I'm not. But hoping to improve or else consider other options.
If you, or anyone else finds it useful to hear about the experience of others, either for validation or to learn about what has or hasn't helpled (kind of like what TUK offers us), you might want to have a look at a frozen shoulder blog. A woman has detailed her experience and there's a comment section where several people have chimed in about theirs.
I had frozen shoulder on my right side and it was beyond painful. I had several cortisone shots which did not help. I finally had surgery done. My doctor clipped away a couple of bone spurs and cleaned out the bursitis. He said it was the worst he had ever seen. After surgery I had about 3 months of physical therapy and it's been normal ever since.
About 2 years after that I started getting frozen shoulder in my left side. I spoke to the doctor about surgery and was planning on getting it, but procrastinated long enough that the pain went away on it's own. I don't have full range of motion on that side, but it's almost full range and it doesn't hurt so I'm going to leave it alone.
I am so glad with everything you all wrote in response to my question! I would love to react to each response personally but my sleep deprived exhausted brain needs to re-read everything and carefully extract the things that seem applicable for me at the moment. It indeed is already very helpful to receive so much recognition and understanding, experiences and tips from all of you. Thanks so much!
At the same time the amount of responses rises a huge bewilderment that so many of us suffer so immensely from this condition. I guess all of us would like to know why this happens, what the cause is at the deepest cellular metabolic level. Is there f.e. any information if people using NDT instead of synthetic levotyroxine suffer less from frozen shoulder or conditions alike?
Are those of you diagnosed with frozen shoulder have pain only when lying down like me, or do you also have pain during the day sitting, standing, walking (in all sorts of activities/situations)? During the day I only feel pain when lifting my left arm sideward, it goes only up for about 35 degrees. Lifting forward my arm goes up about 135 degrees. I can only put the back of my left hand on the middle of my left buttock, this movement already is very painful. Changing clothes and washing myself is quite difficult.
Because of my strong doubts and on a tip someone gave me, I have made an appointment with a fysiotherapist trained in shockwave therapy, to find out if the calcification on my rib/manubrium can be treated - which in my opinion could be a problem factor - and if shockwave or dry needling could be helpful as a pain reliever. Unfortunately the first possibility for an intake is coming Friday afternoon (with treatment to be scheduled after that).
I will keep you updated, hopefully this post will be kept open for a while!
I only had pain when lying down and trying to raise my arm, also could only place my arm at my hip and not round towards my back. I was still running, keepin my arm bent at the elbow was fine but I changed to speed walking at the request of physio (which I found not so good as I like to power my arms when walking fast). Changing clothes and washing was soooo painful.
Fingers crossed for any treatment you find going forward.
Thanks, NWA6, for responding explicitly to my question about moments of pain. And of course for you earlier very helpful reply and suggestions. Sure take them in consideration. Have just rubbed my shoulder, neck and upper arm with magnesium oil
I've had this in both shoulders three times. Very painful. I had acupuncture which seemed to get rid of it eventually but now have levels of pain in both again but it seems to be staying at a level that's not so bad and I can treat with ibuprofen and a hot wheat bag, heat definitely helps and I may have to try the infrared lamp suggested above. Good luck😀
I’ve had shoulder and neck problems for about 5 or 6 years, they come and go but sometimes stay for a long time. I’ve tried physio, acupuncture and steroid injections.
Nothing really worked except when I started T3 and magically everything went away and even my physio was astounded and felt like it was a different person’s body. That’s as objective as it gets.
Unfortunately the T3 effect did not last and my body stiffened up again leading to the pains coming back.
I’m still tinkering with my T4 and T3 doses to see if there is a sweet spot somewhere that eradicates the stiffness.
I have woken up this morning with a really painful shoulder. This is something I have never suffered with before and the only thing I can think has caused it is sleeping with my arm above my head. I have been very restless over the last few nights and actually nearly fell out of bed the previous night which hasn't happened since I was a child!
I had the appointment with a shockwave fysiotherapist, but she said the calcification on my rib/manubrium looked like a bone malformation with calcification on it. Very doubtful if shockwave could improve this and it would be very very painful. She also said that it would only influence my shoulder range of motion with about 3%, so it would not be of much help there either.
She concluded, like the others, frozen shoulder. She advised rest and only subtle relaxing massage of the areas around the shoulder.
In her opinion it would be best to take the PRF treatment to get some sleep which is needed for healing (and funtioning as a human being....).
So I had the PRF last Friday, 15/1.
The treatment itself is not that bad. They insert a needle in the upperpart of the shoulder and it gives micro electric shocks on the nerve for 12 minutes. This treatment is supposed to change the behaviour of the nerve in stopping conducting pain information to the brain. I have to have this treatment repeated after 6 weeks and than again after 6 weeks. If it has effect, that effect may last for about half a year and then the nerve stars to regain it's normal behaviour, but the duration of that varies per person.
The sad things are: it takes 2-5 weeks before you feel any pain reduction as result of this treatment, and, in my case of long lasting shoulder complaints, the chance that it will work is estimated at 50% chance that I will get 40% pain reduction. That does not seem like a lot, and I feel quite disappointed. I hope it will work out much better than that of course, but my sleep deprivation because of the nightly pains remains terrible so far. I tried paracetamol, ibuprofen and since this weekend naproxen, but nothing helps. I received amytriptylin after the PRF but am anxious to take this because of the long list of severe side effects and the big chance of being less alert and not being allowed to drive a car for example. I'm afraid I could get so blurry I could not even work or do my groceries. Has anyone used this pain medication and how did it work for you?
Has anyone had a positive effect of any other pain medication, or did CBD oil work for pain relief?
I will keep you updated if I feel any improvement or if have other new information in this trajectory.
I did not have any pain reduction from the 1st PRF treatment. In consultationn with the orthopedist, continuing with PRF did not seem the best pathway. I was offered an MRI which took place on March 3. I had an appointment today 17/3 to hear the result of the MRI. The orthopedist told me I have osteoarthritis of the AC-joint and degeneration of the glenohumerol joint as well as tendinosis in the areas around. This could be the cause of my 'frozen shoulder problem'. The only option he can offer me is an injection with cortisone in the AC-joint. If that gives significant pain reduction in the coming weeks, then my shoulder pain would be caused by the osteoarthritis (and the tendinosis as a consequence of that). I can than decide for a operation to have a bit of the clavicle that connects to the shoulderblade removed. I have taken the cortisone and have an appointment in 4 weeks to discuss how to proceed.
So, the view on the problem has changed and therefore also the pathway.
Should you have experience with AC-osteoarthritis, then I would love to hear your story!
Thanks for the update, Jocelin. I don't have experience with AC arthritis and had to have a quick internet search on the condition. The shoulder really is the most complex joint in the body isn't it, and the frozen shoulder diagnosis is a murky area. But it sounds like you at least have a clearer picture of what's going on now, and a path forward. Are you feeling any benefit from the steroid injection? I hope this all goes well for you and you'll have less pain and more function before too long. I also hope you've been sleeping a bit better.
Thanks for your kind reaction, dear wellness1. I have not had any benefit from the injection yet, but they said it varies per person how quickly it works. I should at least have benefit after about a week and it should hold on for a few weeks then. I indeed am glad to have some more insight in what is going on. Indeed a murky area, 'frozen shoulder'. I told all the medics I did not really recognize my complaints as being a frozen shoulder. I asked them all if the bony thickening at the position where the clavicula meets the sternum had anything to do with my shoulder pain. They all ignored all my questions and doubts till now. The orthopedist now said that indeed this bony thickening is a complication of the AC-arthritis. I wish I received their salaries for teaching them ;-). Thanks, wellness1, happy to be able to share this with you. Be well!
Just a thought... if you're looking for stories from people with AC joint osteoarthritis, you could do a search of online communities for arthritis patients. HealthUnlocked have some arthritis-related communities. A search for 'osteoarthritis' or even 'shoulder osteoarthritis' on HU might lead you to some more information. Perhaps other fora, such as Inspired or Patient.info might have relevant posts?
I hope you're feeling better soon, Jocelin. Take care.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I hope you find something that helps. 
Painful shoulder
Frozen Shoulder? 
Hashimotos and frozen shoulder, is there a link? 
Burning and Painful Feet in the Night
B12 and shoulder pain
