Did I read somewhere on here a while ago that PMR can affect your vocal cords ? I often find it difficult to speak clearly at length. It’s as though my voice is as exhausted as the rest of me !
Vocal chords: Did I read somewhere on here a while... - PMRGCAuk
Vocal chords
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Bridge31
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I have commented a while ago that my singing voice is not as strong as it was pre-PMR. Fatigue affects every part of you and if you add muscle weakness from steroids into the mix then vocal cords and throat muscles will be affected too. As a music teacher I find this very frustrating!
I’m sure. 😟
Look at the post How we are Perceived started by Cycli.
How do I find it ?
look at his profile -then at his posts ….
EDIT -see link below
Just commented to try to bring it to the top of Recently active.
PMRproAmbassador
Not so much the vocal cords as the muscles that support the larynx. I found other muscles were affected that affected my breath control but I also had a slight permanent sore throat which worsened if I tried talk for long or loudly. Eventually I couldn't guarantee what note would come out - hardly helpful when singing in a choir! I think it is better but after so long not singing at all (well over 15 years) it is difficult to tell.
I sang in a choral society but my voice changed after my changes -well before PMR
My voice changed, and I struggled to work then as I was a communication skills trainer! I remember asking my GP about it but he just dismissed the idea, told me it was stress, that old standard answer for women! I wonder if it's also connected with the sleep apnea I have?
i have experienced this aswell. Had a strong falsetto that I used mostly for humorous reasons, but still, it’s clearly weaker now, and not so clear.
my singing voice has gone, and I can't whistle any longer either.
I never could whistle apart from a sound like a draught under a door. 😄
I was a good whistller . I was told that I sounded like the window cleaner . Nothing now and I miss it.
My voice weakens and becomes 'breathy' as I use up my energy/activity budget for the day. It's a sure sign it's time to stop, lie down and improve the blood supply to my muscles. If I try to push through it, my soft palate and throat become raw. Strepsils help. Looking back, unexplained weakness in the voice and dysphagia (difficulty swallowing) were early symptoms (along with slowly worsening fatigue and pain). It all made sense when the classic PMR syndrome appeared.
Neither of the two rheumatologists I have seen give any credence to the suggestion that PMR (and the presumed underlying, and often widespread vasculitis) can develop slowly, over many years. They are adamant that it is an acute disease that always comes on suddenly in otherwise pain-free people (over 50 and usually much older) and fully resolves in about 2 years. I contend that may be typical, but is by no means the experience of every patient. What struck me was the overlap between my long-term problems with allergies, fatigue, muscle pain, dysphagia, weakness in the voice, traces of blood in the urine, etc. and the symptoms of the acute form of vasculitis called EGPA/CSS; especially since both atopy and EGPA/CSS are associated with elevated levels of eosinophils! Medicine seems to be moving ever more away from scientific detective work and towards box-ticking and pigeon-holing. They can't seem to see the wood for the trees. It seems perfectly reasonable to me that 50 years of mildly-elevated levels of eosinophils might damage the lining of blood vessels just as much as a sudden surge of them in old age; and that that damage might take the form of hardening or scarring rather than current, largescale, active inflammation.
Not even typical if he took a poll on here!
What is quite common is that people seize up overnight at some point - but if they look back there were very mild niggles for anything up to months beforehand. That happened to me, first it was difficult to sleep with my arms above my head as usual. Then stepping up onto the bench in step classes was becoming harder work and I was generally slightly stiff. Then I had an episode of low back pain - something I had had on and off for years - which a Bowen practitioner sorted out, together with some of the shoulder discomfort. I repeatedly went to the GP but because my blood markers weren't raised, there couldn't be anything wrong. Towards the end of this I went to the gym to prepare for the upcoming ski season - and the claudication pain in my thighs was unbelievable. Just after xmas - and skiing, which actually loosened up the hip and shoulder girdle - I woke up one morning with the "typical" morning tin man syndrome. A different GP didn't recognise it and shortly afterwards I was stopped driving for another reason. I was housebound in the UK, we had just moved temporarily to a house with only one toilet, upstairs. I managed to get here to the flat - no stairs, there is a lift. I managed to get my skis to the storage at the mountain so I only had to walk to the bus each morning. Skiing saved me once I'd managed the first very short run! And in the evenings I had the internet - and eventually worked out what it was I had. Months later (June) I was back in the UK and a rheumy grudgingly gave me a 6 week trial of pred to get me through a business trip to the USA> less than 6 hours after taking the first 15mg dose I could move. Six weeks later I had my first morning without 5mg pred - and by lunchtime I was in bed, unable to move and in as much pain as pre-pred. That is also a diagnostic criterion for PMR. And every single relapse/flare of the PMR has been the same - waking up one morning unable to move with knives stabbing into the sacroiliac joints. The most recent in the spring led to a 112 call and being taken to the ED by ambulance! They weren't much use but luckily I had a rheumy appointment later the same morning - he sorted it out thank goodness,
That’s interesting because for years before PMR struck “ overnight “ I had found climbing the stairs increasingly difficult because of the “ jelly “legs.
Ditto. And throughout my 20s, 30s, 40s and 50s, I steadily set the alarm earlier and earlier in the morning to allow the pain and stiffness to subside before I had to get up, get showered and get to work on time. I know this wasn't normal aging because I was teased by my peer group who didn't have the same problem.
Yes! My voice often 'runs out' before I've finished my sentence!
I forget what I wanted to say so that doesn't happen to me.
That too!
yes. I find I am struggling when talking to folks as tho my voice is disappearing and it is much deeper
About 17 years before I was diagnosed with PMR I had a hard time speaking so anyone could understand me. I was diagnosed then with Spasmodic Dysphonia and treated with botox injections into the vocal cords. This allowed them to relax for about 5 months then I had to repeat the injections. I continued this for 9 years until I had a bad reaction to the last set of injections, I choked constantly on my own saliva and could not sleep for more than a couple of minutes at a time for about 8 weeks. Dr. said no more injections for me. Could this have been PMR, seems unlikely since being on prednisone now for 2 years, my voice is even more difficult. I guess if it was PMR my voice would be better, not worse. Anyone have any experience with Spasmodic Dysphonia and PMR together?
it would seem not so far as you would definitely have had a response if anyone reading your post had had the same experience. Your problem with sleeping sounded intolerable. I hope that’s all resolved for you now .
Yes, the choking resolved but with no more botox injections, speaking has become terrible difficult. No one understands me over the telephone and even my husband in the same room who has excellent hearing has to have me repeat things 2 or 3 times. It has gotten worse since my PMR diagnosis. Makes me think there could be some involvement of PMR. I am often misunderstood and I think some folks think I am not in my right mind as well which is frustrating.
😔 I do empathise
I subscribe to the idea that PMR is not a disease in itself, but a distinctive cluster of symptoms called a syndrome. There may be several - sometimes overlapping - reasons for these symptoms, all thought to stem from reduced blood flow in some vessels. In acute cases the cause of the narrowed blood vessels is current inflammation, which usually reveals itself in tests and responds well to treatment. That leaves plenty of room for the experience of a substantial number of PMR sufferers whose symptoms did not appear suddenly; who may have struggled with slowly worsening pain, stiffness and fatigue for years, the onset of which was before the age of 50; who may not show elevated markers for current inflammation; and who get relief from steroids, but whose symptoms return every time the dose is tapered. So, far from your voice problem being "caused" by the the concurrent PMR, it would be more apt to say that they may share a common cause. Notice I haven't used the word 'vasculitis' yet. This is because current, acute inflammation of the arteries/veins/capillaries (the sort of damage that may fully heal as readily as it appears) is not the only way blood vessels can become narrowed: arteries can be narrowed by a process called atherosclerosis, caused by deposits of fatty plaques; and arteries can also be narrowed, hardening or scarred in a process called arteriosclerosis, often due to chronic exposure to tobacco smoke, air pollution, or other irritating substances (perhaps environmental allergens). It seems untenable, to me, that there is not some overlap between these diseases and the symptoms they cause, no matter how much the medical profession would love them to reside in their own silos.
Beg to differ - inflammation thickening the artery walls by oedematous swelling does the same thing and that is what is seen in the halo effect
ard.bmj.com/content/annrheu...
That's a really interesting paper. But, with respect, it's about GCA, not PMR. The symptoms of GCA are much more clear cut than those of PMR, where the link to vasculitis is more inferred than confirmed. A simple, targeted biopsy will confirm GCA, but no such diagnostic exists for PMR. It will be great if the same ultrasound halo test can be used to throw light on the underlying cause of each case of PMR! But nothing in that paper contradicts what I wrote above. Meanwhile, I've been reassured by GPs for decades that there is no association between atopy and any kind of chronic pain and/or fatigue. Then I came across this paper - ncbi.nlm.nih.gov/pmc/articl... - from 2015, which shows that patients with multiple atopy symptoms (eczema, asthma, hay-fever, dust allergy, etc.) are 2.6x more likely to subsequently be diagnosed with chronic fatigue than those without atopy. It would be wonderful to find out for sure where the connection lies, but (given the correlation between PMR and GCA) the effect of elevated eosinophils upon blood vessels must be suspected.
"A simple, targeted biopsy will confirm GCA"
No it doesn't. If a TAB is positive it will confirm GCA, However a negative biopsy does NOT rule out GCA - it merely means they didn't find the giant cells they were looking for. There are various reasons for that including the temporal artery itself not being affected and if it is affected then the lesions form skip lesions so it is common for them not to be identified in the histology.
However, maybe I misread your reply. My point was that arteriosclerosis isn't the only reason for narrowed vessels and that doesn't play a role in GCA. PMR and GCA are closely associated - one day they will identify what the problem is in "just" PMR
You must have misread my post. I wrote that there at least three causes of restricted blood supply due to narrowed vessels: current, active inflammation (vasculitis); chronic hardening/scarring of the arteries (arteriosclerosis); and fatty plaques in the arteries (atherosclerosis). My argument is that if one can bring on the symptoms of PMR, then so could the others, or a combination. Also: the paper you referenced about GCA said that the ultrasound halo test had been validated by comparing it to the well established biopsy diagnostic. I made no comment on the veracity of either.
Um, I don't think it is as simple as poor blood flow, you are ignoring the autoimmune aspect causing the inflammation. PAOD and PMR don't match closely which would be the case in your supposition surely?
Nor was I commenting on the veracity - I was pointing out that there is NO simple diagnosis for GCA either simply because of the unevenness of the distribution of the lesions. The only time the diagnosis is 100% accurate is post-mortem: the pathologist knows everything and does everything, but it is too late.
Everything I have read about how muscles are believed to become abnormally stiff, painful and weak in PMR says that it is due to the restriction of oxygen and nutrient supply to the muscle cells due to narrowing of the blood vessels that serve them. That's poor blood flow. Everything I have read about how facial pain, headaches and sight problems occur in GCA says that it is due to the restriction of oxygen and nutrient supply to the tissues, including the retina(s), in the face. That's poor blood flow. In both cases, the cause of that poor blood flow is said to be narrowing of the bore/lumen. The debate is about how or why the bore/lumen became narrower and whether it only every happens suddenly (an acute disease) or can sometime occur over years (a chronic disease). My PMR came on over at least 10 years, and the widespread muscle pain, fatigue and stiffness gradually over decades: pretty much lifelong.
Don't know where you got that info from, it is supposition based on the effects experienced. Loss of vision in GCA is indubitably due to restriction of blood flow to the optic nerve - to all intents and purposes an ischaemic stroke. In GCA the narrowing of the lumen is due to the development of giant cells in one of the layers of the artery wall causing the inflammation. GCA affecting the blood supply to the retina is very rare. Much of the proven inflammation in PMR is less in the muscles as in the attachments of the muscles to the bones and in the synovium but it is still under discussion
jrheum.org/content/46/12/15...
eyewiki.aao.org/Giant_Cell_....
I try to write for non-expert readers, like myself. Therefore I avoid technical words and excessive detail wherever possible. Nothing I wrote contradicts what is in the references you quote. For example, eyewiki says: "Although AAION is the most common manifestation, GCA can affect the entire visual pathway from the retina to the occipital lobe. Retinal ischemia can result from co-existent (or isolated) central retinal artery involvement". In plain English, that means that the commonest cells deprived of oxygen and nutrients in GCA are at the front end (anterior part) of the optic nerve where it fans out and connects to the rod and cone cells of the retina at the back of the eyeball. Less commonly, the rod & cone cells of the retina itself can be starved of blood supply, either as well as the optic nerve cells, or on their own; as can the parts of the optic nerve that run through the middle of the brain to the back of the head, or the regions of the brain at the rear that process the signals from the eyes and convert them into vision. Isn't it so much easier to say to sufferers that GCA usually threatens people's sight by starving the retina of its blood supply? We all know that's a simplification and does not cover every case! As patients, we don't really care: we just want the best treatment that makes us as well as possible. As regards your last sentence about PMR: PMR is *not* a disease of the joints (ie. *not* a form of arthritis), So PMR does not stem from inflammation of the "synovium", which means the internal parts of the joints (the places where bones meet). However, as we all know, every joint is surrounded by muscles that keep the bones aligned and allow us to move. PMR certainly *does* cause pain in the muscles near the joints as well as those farther away; but that does not mean the joint itself (synovium) is diseased. I don't have a single arthritic joint in my body, but that hasn't stopped doctors trying to pigeon-hole me under "rheumatoid arthritis".
“A simple, targeted biopsy will confirm GCA"
No it won’t as explained by PMRpro…
…and it certainly wouldn’t have in my case. My temporal arteries were never affected….but my ophthalmic artery sure as heck was - was which is why I lost sight in right eye.
Read the paper provided by PMRpro. The team relied upon the biopsy test to validate their ultrasound halo test. Because they correlated well, they concluded the halo test works. That does not mean either test is 100% accurate; only that both have diagnostic merit.
Excuse me? Got the T-shirt thank you...
Restricted blood flow to the optic nerve via the ophthalmic artery caused my blindness -nothing to do with the retina…
Hi there. Read my profile sometime and some of my posts. I have both and there bis no reliable outcome to either test for GCA especially if you have been on pred. I like your thinking and have also said it's not a disease but a condition governed by symptoms. Last consultant told me after we had a chat that I had a "superb " brain and he would think about my ideas. I was a bit taken aback but flattered. If true I hope I keep it. It's the only thing keeping me sane and hopeful during this latest round of upsets. We must all keep searching and trying new ideas and keep hoping for better.
Hi. As I've written elsewhere, the paper provided by PMRpro relates to a study in to GCA by a team of doctors. They tried to diagnose a patient using both ultrasound and biopsies. They found there was good agreement between the two methods. This is good news, because it means more patients can be diagnosed using the less invasive ultrasound halo method in future. The study does not require biopsies to be infallible, nor does it expect the halo method to be, either. I have no comment to make, because my post was about PMR, not GCA.
understood. Not bothered by this. My situation was that after 3 months on high dose of pred the results were not going to be reliable or even positive. Surgeon on biopsy agreed with me a waste of time. The rheumatologist only wanted to tick a box in order to give me TCZ if needed. Only available for confirmed cases of GCA not PMR. I asked for the halo test and he said no point as also compromised by high dose pred over time. As for PMR you might be right about initial causality. We only have symptoms to guide us and many are so similooar to those of other conditions. We have to somehow inform the experts about this and so improve their ability to come to an earlier recognition. I had had it for years before diagnosis and kept trying to deal with it. It finally crunched me to a pretzel almost unable to move. Pmrpro is correct in what she relates. My sight only survived I think because I daily massaged the muscles in neck which the artery passed through supplying the optic nerve with blood. It was painful and took hours each day for 2 weeks before finally diagnosed and took pred. Like pMrpro it relieved the pain and muscle contraction within 6 hrs..
I'm pleased that helped. The (vertebral) arteries in the neck are the big ones that feed blood to every part of the head, not just the optic nerve. GCA is usually caused by problems in the smaller arteries that branch off towards the eyes (the superficial temporal artery, the ophthalmic artery and the posterior ciliary arteries, according to eyewiki). Not every sufferer should expect to find relief, as you did, by massaging the neck.
twas only temporary. I had 18 hrs of head/eye pain daily for 1 week at worst. Couldn't speak properly and tongue almost seized with jaw almost locked.I have damaged hearing also r.h. side. As for PMR it mostly crippled me for the last week. Now I am suffering acute case of pred. induced myopathy. Add to this the cellulitis i am trying to recover from and it isn't a happy time for me. Trying to unpick and deal with everything in a logical way is rather testing.
My heart goes out to you. It sounds like you're caught between a rock and a hard place.
definitely. Thanks. Hopefully it will improve and give me a chance to recover a bit.
I've now read your profile and am both astounded at your lifetime struggle. My heart goes out to you also. I;ve had it relatively cushy up to 68 , barring all the injuries and stupid stuff I've done. So pleased you are finally diagnosed and fairly free of pain.
Might be totally unconnected but what about EGPA, used to be called Churg-Strauss syndrome, just wool-gathering ...
my.clevelandclinic.org/heal...
"Almost all people with EGPA have increased numbers of "allergic type" blood cells called eosinophils. Eosinophils are a type of white blood cell that usually make up 5% or less of the total white blood cell count. In EGPA, eosinophils usually make up more than 10% of the total white blood cell count. In addition, most biopsies (tissue samples) contain clusters of cells called "granulomas" that may or may not involve blood vessels."
That really is the point about my posts. EGPA/CSS is an *acute* disease with very severe and obvious effects upon internal organs, such as the heart, lungs and kidneys. It is associated with the sudden onset or worsening of allergic symptoms and a huge surge in the numbers of eosinophils in the blood. Doctors conclude from this that huge numbers of eosinophils can, very quickly, cause dangerous levels of vasculitis. Turn now to people living with atopy. We live with constant allergic symptoms and often have mildly elevated levels of eosinophils for long periods. Doctors argue that there is no connection between atopy and PMR or chronic pain and fatigue. Then along comes the 2015 paper showing a very strong connection between them, but I've yet to come across a doctor that is aware of the study, seven years later. Last time I mentioned it, I was accused of consulting "Dr. Google". They believe chronic-onset PMR is a myth. ncbi.nlm.nih.gov/pmc/articl...
Not all - I know quite a few who "get" it, the same as chronic/life-long PMR. But I maybe graze in elevated pastures. Some do change their tune about DrG when you show them the same evidence they could find using PubMed or ScienceDirect. When I started this lark some 14 years ago there was a lot more available "free to air" - they have no excuse, it is all paid for for them! My first GCA specialist physician here used to schedule me for the last appointment of the morning/day and print out new papers for me! Then he went and retired but not before he'd persuaded my current rheumy to come here- and he is a world name in the field.
Just copied this from the rude rheumatologist post. Think a chat with Churg would be helpful. "I have never quite understood the “hierarchy “ , for want of a better word, of this wonderful forum. Could you explain about Ambassadors and pros. Who are the salaried staff? Are there any doctors on the “board” who have an interest in vasculitis? Finally if you wanted to volunteer to be on the panel what is required of you (in my case I am a retired GP and have EGPA)? As for fund raising I am writing a book which includes my own experience with vasculitis. I have had it for forty years, 20 of which I was undiagnosed. I am now in remission. If I am published (I really write children's books!)I will be giving the royalties towards vasculitis research. Why aren’t vasculitis uk and PMRGCAuk all in the same charity to give a bigger voice and also to give donations to rather than duplicating research effirts and administrative costs. Many thanks"
Whoever wrote that said a very interesting thing. It would be great to hear more from a GP who has had vasculitis "for 40 years, 20 of them undiagnosed".
Churg is on this forum so message him or drop onto the thread about the rude rheumatologist. You can engage with him directly
in reply to Darkchocolate1
I was told my voice problems were due to my laryngopharyngeal reflux and/or muscle tension dysphonia. Alginates like Gaviscon Advanced and Reflux Gourmet have helped but they also cause diarrhea. It never occurred to me that the voice problems might be related to the PMR. It's started to sound like everything is related.
AtopicGuy in reply to
Years ago, when I first struggled with weakness in the voice, I was prescribed speech therapy by a junior consultant. When the senior consultant came back from holiday, he stopped that and said it was "globus hystericus", which means the sensation of a lump in the throat caused by anxiety and stress. I took his advice, did relaxation exercises, changed job and learned to use my voice less. The problem never went away, I just learned to cope. It slowly got worse with age. As with most PMR symptoms, living within your energy budget - whenever you can - is key.
This is the first time I've heard of other PMR 'patients' (a very appropriate term in our case, I think you'll agree!) having voice problems, though a consultant did suggest to me that long-term steroids could well have a impact. I've sung in choirs all my life, but around 4 years after I began with sudden and severe PMR symptoms (which my rheumy then failed to diagnose for 9 debilitating months), my voice began to let me down badly, becoming husky at times and far too unreliable to sing in a choir. Indeed, a lifetime of singing while I washed up, fed the kids, drove to work, etc etc just stopped. A speech and voice therapist has helped me greatly in the last year, but my voice is neither strong nor reliable enough to sing again with my lovely choir friends. I was never a great singer, but I miss that important part of my life.
Thanks for raising this, Bridge31. Our issues may not be identical, but it seems that we're definitely not alone in experiencing vocal problems.
I’m so sorry you have had to give up something you loved doing. I have a couple of friends who find singing in a choir so uplifting and therapeutic .
I too am having vocal difficulties, including my range. I'm hovering between alto and tenor, and sometimes I can't be sure where my voice will be - so I will be leaving my very small choir after Christmas. With only one other on the part, I'm a liability. But I've found a much larger choir where my vocal unpredictability won't matter nearly so much, where I hope to continue to sing and to regain my former voice over time. My age, alas, is not on my side - but I so love small choirs.
I sing in a choir and have had problems singing. Sometimes it is alright and other times nothing comes out.
😥😥
sorry to have missed the post earlier. I was a tenor/baritone. Singing coach said I had "a voice" Now I don't. As a child was the lead chorister. Our choir recorded for BBC. Now I can't hold a reliable note. It's so sad what we all lose with this condition.
Very sad as obviously it was something you had hoped to be doing for the rest of your life.
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