bilateral frozen shoulder Need advice
Posted , 23 users are following.
I have bilateral frozen shoulder. Right is worse than left but both are in the freezing stage at the same time. I am 4 months in and the pain is getting worse instead of better. Had one cortisone shot (in the right (dominant) arm) and will have one in the left arm this coming week. It did not help at all. I am waking up at night with my arm jammed which is causing excruiating pain. I can't seem to find a comfortable position because I have it in both shoulders at the same time. I'm exhausted.
Eating has now become very difficult because raising my hand to my mouth is not only difficult but very painful as well, again because I have it in both arms I can't simply just use the other arm.
I'm looking for some help. I need advice on ways to make my life easier because I understand that the frozen stage will make things more difficult. Just how limited will my ROM be? Right now my hubby helps dress me, puts my deodrant on, etc. How bad is this going to get. I'd like to know so I can mentally prepare. I'm getting quite down over this. Luckily I'm a therapist so I'm busy pulling from my toolbox and doing therapy on myself but man this is hard. I've had numerous medical setbacks over the past three years so I was pretty ticked when this hit me out of the blue. I still find this hard to accept and am researching it like crazy. I am a former nurse so I understand the medical jargon quite well but it is still frustrating to read all the medical journals and see idiopathic as the cause.
Any advice would be greatly appreciated
1 like, 29 replies
FSresearcher mamaelaine
Posted
I've done a fair bit of research into FS and you know it is inconclusive. If you look up Google Scholar there are clinical studies which acknowledge it's a poorly understood area. I've looked into clinical trials done on different clinical treatments and there doesn't seem to be much evidence supporting any of them. Here are the exceptions as I understand it: Steroid injection can be helpful if done soon enough - but definitely not guaranteed. Also, there's a new treatment now called Hydrostatic distension - hydrodilation which seems to be helpful. I'm about to have this - in about 3 weeks time and will update people on it.
I did read that there's evidence that acupuncture can help. Maybe you should give that a go as I've read this on google scholar and elsewhere. Oh - and lastly - in my case - I did have some craniosacral therapy. I did find that helpful. She said it would help with the traumatic element and that does seem to be so. There's another contributor to these discussions who has been very positive about 'energy healing' approaches (Reiki etc).
There's someone in these discussions called Gerry the Neck who recommends rest and allowing FS to take its course - and there seems to be alot to be said for that approach.
Sleeping is a real problem. Here's what I did. Sleep propped up against 3 pillows so you're semi upright with a nice soft pillow under your neck to support your head. Under each arm (in your case you poor thing) have a small pillow to support the arm and take the weight off the rest of your arm. How difficult it must be for you. Perhaps you do need some help from pain killers too and maybe other things (sleep aids) - given what you have to contend with.
I'm a therapist too by the way - so I understand what you're saying about getting some therapeutic value out of this life challenge. I hope your husband is good to you. You need good support. Some nice shoulder massages help I think as there's so much tension held there caused by resisting the pain.
Good luck
xxx
caitlin39841 mamaelaine
Posted
Caitlin.
joan27950 mamaelaine
Posted
My my advice for you regarding your sleeping is to surround yourself with pillows. Several in back of you, and several under both arms. With you having two FS, change your position aloit to try and avoid issues with your neck and back. The freezing part will get better as far as the pain goes. Hang in there on that! It will improve. The movement of your arms will improve too, but I'm beginning to think that it just has to take its course because I've been like a human science project for all of you. Also, the cortisone shot I had did absolutely zero for me. What does help during the freezing stage to sleep (so I hear...not speaking from personal experience) is medical marijuana. That and a few bloody Merrys work better than any pain killer....so I hear. Haha. I'm not kidding....dead serious and I am 51 years old. Of course I'm in the good old USA, so I do t know if it's legal where you are. I hope this doesn't get me kicked off the board here, but we're all desperate for answers and if it's available to you....and legal...do it. I think its a much better option, if legal, than getting addicted to Oxycodone or other pain killers (which frankly don't help after awhile). Anyhow.....God Bless you and hang in there. I hope I don't see any of you over on the Spinal message boards, because I'm worried that's where I'm heading. Keep in touch everyone..
karenmarie mamaelaine
Posted
mamaelaine
Posted
I knew that the injection was only a 50/50 shot because he was going in blindly and it really should be done under ultrasound guidance but again in Canada---long wait times and I was desperate so I said-I'll try anything for now. I am not sure if they will do hydrodilation here but I am definitely going to mention it on Tuesday. I have read lots on the capsular release so I am also going to ask about this because I had a similar surgery done on my hip about two years ago (labral debridement) and it worked wonderfully. They don't like to do surgeries here and wait times are about 2 years which means it will likely be over by the time I get a surgery booked I am going to push though if things go on beyond the normal time flow. I can get on a list and if it clears on it's own then I can cancel and some other lucky bugger will get my spot
I am so thankful to find this site because I thought I was a big baby. I cannot believe the level of pain. I have been through 5 deliveries (no pain meds) and numerous surgeries and illnesses so I thought I could handle pain but this thing has literally brought me to my knees. It has been wonderful to find a community of people who truly know what this condition is like. I laugh and cry as I read the posts. It has been very cathartic for me. Thanks again all
karenmarie mamaelaine
Posted
cheryl95104 mamaelaine
Posted
I really dont know how you cope with two totally frozen ones. You really need some help with this and I would continue to make a fuss if I were you until they sort you out, you surely must be a special case with two shoulders, it is like being disabled and waiting two years is worse than the NHS here in the uk.
I am having arthroscopy capsular release on my left shoulder on Friday with a little bit of manual help and cortisone on the right in the hope of dampening down inflammation and stopping the formation of more.
I will keep you posted on how i get on. This might be an option for you.
At only 4 months, I fear you have a long way to go, but you never know with this weird thing, it may resolve as quickly as it started. Take care of yourself, get plenty of rest and dont take no for an answer with the specialists and get some help.
Cheryl
yvonnebonnie mamaelaine
Posted
maggiemayes123 mamaelaine
Posted
WOW, I can relate. At the beginning of April, my left shoulder started to ache and I noticed I was having difficulty reaching into the backseat of the car, undoing my bra, things like that. A week later, my right shoulder started to throb. Shooting sparks of pain travelling down my biceps muscle, sleepless nights...Very quickly, I had limited ROM in my right (right dominant) arm and was heading that way with the left. After ultrasounds and xrays, I was diagnosed with FS in both shoulders and PT was suggested but only limited to exercised that did not hurt. What a joke. Walking hurts. Most days, breathing hurts. Like you, I live in Ontario, Canada and there is such a long wait to see anyone, this disorder will probably work itself out before I can get anything done. But, I am still trying to keep a positive attitude, which is very difficult some days. I bought spray deodorant the other day and was able to put my own deodorant on for a change, thank you very much (even though most of it was dripping down my arms).
Have you had any success getting help and have you had your hormone levels checked? I am 50 years old and have been reading that this issue could be related to menopause and treating women with hormone therapy has been found to resolve FS for some within a couple of months time. Wouldn't that be nice!! I am making another DR appointment in the morning to talk about this and we will see. I know my doctor is sick of me researching this and almost dismisses my questions, but I will keep pushing until there is nothing else I can do. No one should have to live with this and just wait for it to go away.
lisa15996 mamaelaine
Posted
sarah81281 lisa15996
Posted
I know you were on this forum 2 years ago but I am curious as to how you are now? I too am suffering bilateral FS, now in the 5th month. I am due to have injections on Monday, they can’t do both sides at the same time. I am now off work for the last 5 weeks and I’m sure my employer thinks I’m skiving off work. People who haven’t had this do not fully appreciate the pain that we are suffering, not to mention the lack of sleep! I actually hate nighttime now, I dread it with a passion. My husband has been good but even he is starting to lose patience with me which is not very nice. I feel really snappy as being in constant pain and exhausted. Please let me know how you are after 2 years. Thank you!
Sarah
lisa15996 sarah81281
Posted
Remember, it WILL get better.
sarah81281 lisa15996
Posted
Thank you for replying. There is light at the end of the tunnel then! I’m so happy that you are well on the way to full rebcovery. I’m 47 but feel 77! Will keep you posted. Thanks again.Sarah
DPD0069 mamaelaine
Posted
I'm really glad to have found this discussion and see that there are others out there with the same situation.
Intense pain in right shoulder, especially when trying to extend. Reaching back to pick up my daughter's water bottle, for example, has me literally seeing sparks and feeling pain like I've never felt. Pain level anywhere between 3 and 5 when not otherwise using the arm. Waking up at night when it's moved during sleep.
Have had multiple Cortizone injections, and an MRI that was unremarkable, no rotator cuff issues. Chiropractic has brought minimal relief which does not last
Now pain is beginning in left shoulder as well. Not nearly as bad as in right, but I am very much afraid it is only a matter of time.
If anyone has found an answer, please please post it here. I have been to two orthopedists who have referred me to a third super – expert. If I don't take pain meds, I cannot function and use my arm.
I hate this and I am as desperate as the others posting here, I hope someone has found a solution. I am a 49-year-old male, office worker. As others have said, it is very, very hard to live this way. I recently lost an elderly relative and someone commented "at least she's not in pain anymore." It scared me how much are related to that. This cannot continue.
My general practitioner doctor just ran a blood test to check for any kind of autoimmune issues? I don't know, but I will certainly be back here, especially if some solution is found.
Please others, do likewise if you find something.
rita1967 mamaelaine
Posted
I am from Toronto with bilateral frozen shoulder. I am 49 years old and feel like loosing my mind....
I am on opioid painkillers and have an advanced incurable cancer with
caitlin39841 rita1967
Posted
Hi rita 1967/mamaelaine.
I am Sooooooooooooooo SORRY to read about your dilemma. My heart truly and sincerely goes out to you. No, your not loosing your mind as pain can make you feel as thought you're loosing it. I felt I was loosing my mind until I was properly diagnosed and treated. I was diagnosed with a so called ''frozen shoulder'' when in fact I had ''Costochondritis ''. I wasn't able to breathe properly, so subsequently couldn't get enough oxygen in, I was therefore gasping for air and felt I was dying and no body was listening. When I eventually got properly diagnosed and treated I was able to breathe again and was almost pain free. As a human being and a professional who has worked in all areas of medical/nursing care, my heart goes out to you. I've been where you are and I know the desperation and can only say my human heart is with you and your pain. I hope that helps.
Debcos caitlin39841
Posted
Sorry to hear of what you have been going through!
My doctors thinks I have frozen shoulder and am having an MRI next week to confirm! The pain is absolutely one of the worst pains I have ever experienced and it's now starting in my other shoulder as well! Sleepless long nights and the pain together make you want to cry!!! I am on pain meds along with Ibuprofen 800mg 3xs a day and it doesn't help! Anyone have any other advice?
janis26 Debcos
Posted
I was recently diagnosed with frozen shoulder and the pain is intense. I saw PCP, went to PT for a bit then went to ortho who did an x-ray which was normal. He checked my very limited range of motion and said I needed a cortisone shot. He was very abrupt but running behind on his visits. Waited over a week for the shot by a Rheumatologist. She was very nice but my arm was so frozen and muscles so tense that the shot killed and di little good. doing my own gentle stretches from PT home exercises and using heat and at times Motrin or Naproxyn. Sometimes I get unexpected jerk and it feels like my arm was sawed off. Just when I think it may be improving, bam, PAIN! Reading so much about it as I'm desperate for a solution but not sure it's going to be a quick one.
Debcos janis26
Posted
I sympathize with you!!! I had a cortisone shot 2 weeks ago and I had no relief I am now going into 6 weeks of pain that is getting worse, I am hoping the MRI will confirm what my Doctor thinks is wrong! I can not lie down to sleep instead I have to prop myself up on pillows. It's a living hell??
janis26 Debcos
Posted
Here's hoping the MRI shows something treatable. I can do gentle arm stretches and apply a numbing cream to help me get my arm in a more comfortable position to hug a pillow on my side, frozen shoulder side up to sleep. I am waking early because of stiffness and achiness so I apply heat and do gentle stretches.
Debcos janis26
Posted
I have been reading up as well and I have read that it can take up to 3 years for it to go away!! My endocrinologist I saw last Friday said I hope for your sake the diagnosis isn't FS!!!