i thought doing a poll on how many people with psp cbd and parkinson's disease who've had a head trauma in the last say 30 years that for example involved major head trauma, whiplash, a fall resulting in a head or neck injury, anything that you or carers can remember. not for one minute am i saying or implying this is the cause. just a question to put out there. thanks.
What are the pain medication people or car... - PSP Association
What are the pain medication people or carers are using to help with PSP and do they work and did the neurologist offer any pain medication?
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34 Replies
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Pain is in principle not a typical symptom of PSP or CBD. However, pain is often the consequence of falls, stiffness, and poor posture. Falls need to be avoided at all cost. They can lead to head trauma, misalignment of the pelvis and / or hips and this eventually will lead to muscle pain. My wife had those problems, but luckily no head trauma. We have been prescribed naproxen in combination with paracetamol. But in order to tackle the root cause of this problem we have involved a sports injury clinic to correct the misalignment and the muscle stiffness with massage and exercises. We have now reached the point that no pain medication is any longer needed unless my wife walks for a period. So in that case we give her one tablet of naproxen 15 minutes prior to a walk. That prevents the pain to come up and prevents the automatic muscle response to tighten up. My wife gets however once per week in any case a two hour massage / exercise to keep this under control. And with great success. It is important to get somebody involved who has the necessary qualifications though, e.g. a personal trainer.
• in reply to
gerko thanks for your reply,you are right, pain is not a symptom and yet so many are suffering with these conditions, we were told she should take 8 paracetamol a day! she has pain all down the left hand side of her body, her neck shoulders both arms pelvis/hip knee and feet. i believe she has a misalignment of the neck, you know like she a crick in it, when she turns her head she has to turn her whole body as well, may i ask you a question sir? did your wife have a trauma to her head or neck prior to her condition which may be causing her pain?
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No my wife did luckily not have a trauma to her head. I would suggest you take your wife to a chiropractor to see if she needs treatment. The same goes for the pelvis and hips. If there is a problem with misalignment then that is causing sooner or later the pain and just using pain killers is doing nothing to resolve the issue. in fact it makes matters worse. the problem is that the misalignment causes muscles to contract and then nerves get trapped causing the pain. Pain killers do not solve the issue. The only way is: 1. To correct the misalignment. This can be done by an osteopath and / or chiropractor. 2. To provide massage and exercise. This needs to be done by a qualified trainer. (1) alone will not solve the problems as the muscles once contacted will pull again the neck, hip or pelvis out of alignment. So (1) and (2) need to be done in tandem. And I am afraid, even when the muscles become less tight and will no longer cause misalignment, it will be necessary to continue once a week with the massage and exercises as there is a tendancy with PSP and CBD that the shoulders get tight and if this is not being treated it will travel done the arms, back and legs.
In the meantime I would recommend naproxen 250 mg three times a day together with Paracetamol 500 mg 4 times 2 per day. You should get that on prescription free of charge. Hope Do not expect a very quick improvement it can take up to 6 weeks or longer before you start seeing a positive change. But this is the ONLY way to address the problem. Finally, please pay attention to posture. My wife for example has the habit to stand on her toes. First of all this destabilizes her and increases the risk of falls, but secondly it will cause muscles to contract, in particular the shin muscles which then can lead to shin splints, which is extremely painful and can only be resolved by massage. Also bending forwards when walking causes eventually problems. When you do that, you hunch your shoulders and that sooner or later causes pain and stiffness in the neck. The reason why this is happening is because PSP and CBD suffers have problems with their vertical gaze and are afraid to fall. So they need to keep their head upright and pull their shoulders back and walk on their heels not their toes. Hope this helps
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gerko your post has been most helpful and full of insight, my mother in law also has the habit of walking on her toes and she does hunch her shoulders while complaining of tight neck and shoulders, we are actually thinking of seeing a upper cervical chiropractic for the pain, thank you very much your post this does give me something to think about.
shasha• in reply to
what about the constpation caused by the pain killers /
• in reply toshasha
i believe pain medication only offer relief short term and you are right they cause constipation which does not help at all, gerko i think is on the right track,
lemmej• in reply to
Gerko, thanks very much for sharing that information on the options that can be used to assist in pain management. My Mum was diagnosed with PSP in 2009 and I have cared for her all this time. Treatment from a kinesiologist (study of human movement) over the past 3 years have kept stiffness and pain at bay. In the earlier days of the condition she would stiffen, this went away but over the past week I noticed that she would tiptoe after getting up from lying down for a long time. Two things have been happening for the past 4-5 months: (a) it seems as if Mummy is unable to hold her upper body in an upright position and therefore we will put her in a recliner in a semi-lying position, and (2) her eyes are closed 95% of the time and she seldoms says anything (very quiet) which is not personality - she was quite a "chatter box". Is this the norm?
• in reply tolemmej
Hi Lemmej, it is quite common that the speech is getting weaker and quieter. This applies also to my wife. As she has a lot of problems with talking anyway, she is having speech therapy now already for 4 years, private as well as from the NHS. That has definitely helped to slow down the decline, but did not stop it. My wife is being tested every 6 month by the Neuroscience Department at Addenbrookes' Hospital. They established that her cognitive capacity has hardly been affected (not always the case), but she has problems in calling up words she wants to use and therefore communications are problematic. What helps is when people take the effort to ask questions. She then always responds and eventually a decent communication develops. The speech therapy also uses special techniques to help her communicating, for instance by giving her short sentences about day to day communications.
Coming back to the issue of pain. My wife also tiptoes and that is all a result of stiffness from the shoulders. When you talk to a strength coach or a personal trainer, they will explain to you how this all works. Basically all the muscles in your body are interconnected and if you do not use some, or abuse some due to wrong posture, then sooner or later that will result in pain. So in the morning when I dress her I have to tell her all the time not to stand on her toes, but on her heels. When she walks as well. Before she goes to bed again. It is very important to remind her all the time. She is now getting each week a 2 hours treatment, massage and exercise to strengthen her core muscles and to relax the muscles.
My wife also started to stoop, which is typical for sufferers of PSP, CBD and Parkinson. And this has to do with the eyes, up and down movements are restricted or delayed, and as a result people start to hunch forward and look down afraid of falling. It also is the result that focussing of the eyes is delayed. So it is very important from the word go to fight this. So the exercises are also aimed at improving the posture and to exercise the core muscles.
I cannot emphasise enough how important it is that exercise, including walking is maintained. When I walk with my wife, holding her hand, she actually starts walking more or less normally after a short while. And that is an important stimulus to the brain to re-learn the basic movements. She gets tired quickly, so we take rest pauses and we use also the wheelchair to alternate the exercise and give her enough time to recuperate. I do not know if all the above is still possible with your mum, but if it is, then it is worth the effort.
At the moment she does not need any painkillers anymore at home, but before we go on a walk I give her 15 minutes in advance one tablet of naproxen 250 mg (prescribed by the GP on my recommendation) together with two tablets paracetamol 500 mg. This prevents pain to come up during walking or at least suppresses it so that the pain is hardly noticeable. This technique is also being used in sports injury treatments, because as soon as pain comes up the body automatically responds subconsciously to alleviate the pain resulting in incorrect posture. So this procedure really works..
One of the symptoms my wife had early on is that her overall stamina has declined significantly. And this is something I never could understand as this is not being mentioned as a typical symptom for the illness. But it is. However, my wife so far never sleeps during the day. We get up at 08.00 each day and she goes to bed at 22.00 promptly. So she gets a good night sleep. This discipline is also very important in order to avoid continence mishaps.
I have seen many people by now with the same affliction and I have to say no two patients are the same. Although the affliction comes under the heading of PSP / CBD / Parkinson, the progression, the type of symptoms are different from person to person. I have yet to see two people with exactly the same symptoms. Basically the medical profession have still no clue what is causing it, what the pathway is, whether / or not it is a clearly identifiable illness. I was amazed to learn for example that Parkinson is a clearly defined illness. It is not, there are many different variations, and the typical symptom of trembling for example does not appear at all in many sufferers from the disorder. So you need to look at each case on its own merit and take appropriate action as required to postpone and progression and its side effects as much and as long as possible.
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Hi Gerko
I think you'll find that the stoop has nothing to do with the eye problem. In idiopathic Parkinson's many patients have a typical stoop (antecollis - forward flexing neck), but they do not have vertical gaze palsy (unable to move eyes down or up voluntarily). The latter is a cardinal clinical symptom in PSP. Some PSP sufferers may have an antecollis neck or a retrocollis neck (backward flexing). This neck stooping is a problem with muscle control due to damage of certain motor areas in the brain. The falling has little to do with the eye problem and "fear of falling". PSP patients fall due to a combination of problems. 1. pathways through the midbrain and basal ganglia to the motor cortex (via the thalamus) being damaged (along with some cerebellum damage) . Many fall without any warning signs, and others may describe a feeling of dizziness. 2. Freezing gate (as seen in Parkinson like diseases) especially when turning (again through motor damage) 3. Unable to look down or up, they will tend not to see objects on a low level, and often bump or trip. This vertical gaze palsy (and in late stage PSP horizontal gaze palsy can occur) can cause diplopia. Some research suggests that the balance mechanism connecting eye and ear can be damaged (but not hearing itself).
Fatigue (you called stamina) is a very common symptom in Parkinson's and associated diseases like PSP/CBD. We have talked about this many times on this forum. Apart from the "effort" required to walk, move, eat, talk and think (because of multiple neurotransmitter problems), there is also mitochondrial dysfunction (the cell bodies that produce energy for all cellular mechanisms). Additionally, there's an area in the brain that is damaged (shown at PSP autopsy) that has a function of "alertness".
You mention "trembling" or tremors, and this is a major symptom of idiopathic Parkinson's but not PSP.
Medical research has come a long way in identifying the pathology of these diseases, even though a main causative element has not been identified with this type of disease or many other neurological conditions.
All the best
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Hi Strelly, many thanks for your comments.
I did not say that my wife suffers from trembling and indeed this is not typical for PSP / CBD. What I was trying to say is that most people wold link trembling to Parkinson's but many Parkinson suffers actually do not tremble at all. In other words, there are many different types of Parkinson's or may be not Parkinson at all, but a different neurological disorder. At the moment research is still being carried out at Addenbrookes' Neuroscience Department to try to classify the various neurological disorders by looking at the pathways to see how they can really establish what is going on. The problem is that most research has to rely on autopsy as it is not possible so far to figure out what happens in the brain. There are a lot of theories, but many of them have already been overturned in the last few years. One for example is the idea that certain type of tau proteins are to blame, but whilst it is true that in diseased brains they find high levels of those proteins, that is not necessarily the cause but the symptom of the disorder.
As far as fatigue is concerned, I agree this is most likely to do with the mitochondrial dysfunction. But in the PSP literature that is not being mentioned.
As far as falls are concerned, I agree with most of what you say. IN the case of my wife however we have a different problem. Her up and down movements are delayed first of all. And therefore she bumps into objects as you say. However she used bifocal lenses and that was causing in particular problems when moving up and down the stairs. When she was looking down, she obviously did not see the steps correctly. So we have now reverted back to reading glasses and distant glasses and that has resolved this issue significantly. Secondly, she has the tendency to tiptoe. Any Physiotherapist will tell you that this affects the balance, making it less stable. It also triggers a forward motion and therefore in combination with the reduction of balance this causes falls. My wife has indeed more forward falls than backward falls. I would say the ratio is about 9 to 1. My wife does not suffer from dizziness at all. Falls of course must be avoided at all cost as they can cause additional severe problems. So we have a regime in place that reduces the risks to a minimum.
There is also a confidence issue. When I walk with my wife I hold her hand, but she hardly needs it. And her gait after a little while becomes normal. but as soon as I let her walk on her own, she starts to shuffle and / or walks with a stiff leg again.
And once again, each case is specific and I still have to see two patients that have the same symptoms or problems. and that to me is the clearest indication yet that the medical research has still a very long way to go to discover what is the cause of this range of neurological disorders.
• in reply to
Hello again Gerko
Thanks for your reply, and the detailed description of your wife's walking and falling problems. I do agree that PSP (and similar conditions) presents quite differently in sufferers and with different severities of symptoms throughout its course.
Good to know Addenbrooke's hospital is studying the pathways of these diseases. We know that a definitve diagnosis only occurs at autopsy, but the neurological researchers attempt to classify sub-types of PSP according to clinical criteria. There certainly is overlap in these conditions, like CBD and PSP, and some have other neurological conditions develop like FrontoTemporal Dementia or Dementia with Lewy bodies. As you say, there's still debate about tau neurofibrilliary tangles being the "cause" of neuron death, or a protective mechanism against other cellular malfunctions. The most recent research suggests the "toxic" form of tau that develops causes the actual cell death, and this substance has been shown to move along neural pathways through neurons, and converts normal tau into the toxic form. This certainly seems true in Alzheimer's.
Back to the practical - my wife has similar problems to yours with respect to balance and eyesight. She had a short period of standing on her toes or sometimes her heels. Our Physiotherpist has helped her with better "walking" although she mainly shuffles with a Zimmer frame and has to have someone (usually me) hold her. She used to fall forwards and sideways, but now it's mostly backwards (but of course with me beside her she is prevented from such falls). Here in Oz (Perth) most of our homes are one storey (probably bungalows to those in UK), so we have no problem with stairs!
I wish you all the best as you take care of your wife.
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By Erin L. Elster, D.C.
Can injuries to the head, neck, or spine cause the onset of Parkinson's Disease (PD)? This is a debate that has waged in the field of medicine for years. The suspicion has lingered and doesn’t seem to be fading at all with time. In fact, more researchers are documenting cases of PD diagnosed subsequent to spinal trauma; too many to be caused by chance.
Parkinson's disease has a variety of symptoms that range in severity. The early symptoms of PD can be as subtle as a mild tremor in a finger of one hand. Other symptoms include slowed motion, rigid muscles, loss of balance, impaired speech, difficulty swallowing, and a fixed expression. Impairments worsen over time as the disease progresses.
The cause of Parkinson's disease has been questioned in the medical community for decades. Countless studies, clinical deliberations, and robust debates have made little progress in discovering the source of the illness. Numerous theories have been proposed including that environmental toxins are involved and that there is a genetic link. What is certain is that PD develops when cells in an area of the brainstem called the substantia nigra are damaged or destroyed.
Some scientists are beginning to conclude that trauma to the head, neck, and spine contributes to the damage of the substantia nigra cells. These professionals suggest that the precise impact to the central nervous system, through whiplash, concussion, or similar trauma, will either cause PD to develop or once subtle symptoms to worsen. Researchers believe that trauma to the central nervous system may alter the blood-brain-barrier, which many consider to be a critical step in the destruction of brain cells.
More researchers are documenting cases of PD diagnosis after head trauma. Often, the instance of trauma, such as concussion or whiplash, occurred more than a decade prior to PD onset. In addition, medical professionals are noting that many patients already diagnosed with PD have an increase in symptoms following a new traumatic event. There are some practitioners who believe that the problem is isolated in the upper neck; that the cervical vertebrae become dislodged or misaligned by trauma, which can interfere with the central nervous system.
More research is needed to determine the causal factors for Parkinson's disease. Until then, there are a variety of treatments and support systems available for patients that are only a search engine away. If you have questions or concerns about this illness, please discuss them with your health care professional. i was most interested in the fourth and fifth paragraphs.
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Hello Gerko, a little update, the chiropractor has worked wonders, major reduction of pain in her neck shoulders back and hips/pelvis, she has started using a cane again but still using her walker as well also she is not walking up on her toes, Hip/pelvis is out of Misalignment, she hasn't fallen since she started going, her confidence is Up! the only problem of course is her eyes but in herself big improvements, also she has vitamin B12 Methylcolbalamin 1mg 3 times a day for brain function and vitamin D3 5000iu daily for her immune system, and Magnesium Chloride, in time we will add a few more supplements like black seed oil. if you like i can post an update again.
Many Thanks.
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Hi, I am very glad that this therapy worked. But be aware that it is still necessary to have regular massage and exercises in order to prevent this from reoccurring. I am amazed that so little is being said about pain management and what to do. And if people had falls it is very possible that misalignment can occur and if nothing is being done about it, it will eventually result in excruciating pain. So luckily there is a good therapy for this. And last but not least, I have said this many times by now, falls must be prevented AT ALL COST. And again whilst you cannot control everything 100%, by adopting certain procedures we have been able to minimise falls to almost zero.
• in reply to
hi gerko thanks for your reply, you was right, this therapy does work for pain management, her body was out of alignment particularly her head, most of the pain was coming from her stiff neck/shoulders i.e trapped nerves and radiating pain into her hip/pelvis, back and knees, there's one odd thing that has happened, her speaking voice has got slightly stronger?
Many Thanks Gerko.
Mum only had pain once she was bedridden and was not given anything by the neurologist. She was given Paracetamol when required which was not enough as she was not able to tell people when she was in pain and also tried to tough it out. The hospice authorized pain relief patches and this made mum much more comfortable. Ibuprofen gel was used in the painful muscle areas . The patches made tho best improvement.
daughterno1, thank you for sharing, there is what is called a nerve conduction study test, from webmed: An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals.
Nerves control the muscles in the body with electrical signals called impulses. These impulses make the muscles react in specific ways. Nerve and muscle problems cause the muscles to react in abnormal ways.
If you have leg pain or numbness, you may have these tests to find out how much your nerves are being affected. These tests check how well your spinal cord, nerve roots, and nerves and muscles that control your legs are working.
maybe by doing this test we might be able to find out why there is pain in the body, if our loved ones weren't in so much pain the insult of these conditions would be a little easier to bear.
Most of the time mum had an exceptionally high pain threshold- I, my sister and a carer in turn all found her pouring with blood from head wounds on different occasions (before we found out she had PSP and she was living in sheltered accommodation) but mum was unaware. Mum also broke her nose shortly before going into sheltered accommodation but did not tell anyone. It was only my vigilance and former SRN training that uncovered what she had done.She was only in pain in the end stage when she got contracture of the hip. She had a severe fall on the same hip 3 months prior to end stage and although it had a massive contusion I got her x-rayed and there was no fracture but I do wonder if it had any bearing on things. Mum did not have any extra help such as EMG as her neurologist was not interested once he made the diagnosis. His standard comment was that he was sorry but the prognosis was poor! No follow up, no support.
• in reply to
daughterno1 i was led to believe neurologists were experts in dealing with the nervous system or central nervous system and that pain was the nervous system showing us that there was something wrong with it, why can't neurologists think outside the box a little for pain management? you are right, once our neurologist made his diagnosis it was ' IF you want you can make another appointment and then WE CAN HAVE A CHAT!!?? what about? if you can't help us why do we need to make another appointment? i feel your frustration, i am starting to think that we as carers and family members have to do their thinking for them as far what we can do to manage the pain. if seeing a specialist such as an upper cervical chiropractic is the way forward in terms of pain management we've got nothing to lose. i thought gerko made some excellent points regarding that.
• in reply to
I agree; we shouldn't have to find our own professionals and it is the only alternative to nothing but at the same time I think that Continuing Health Care funds should be surrendered quickly to people with PSP in order for them to pay these professionals! It beggars belief that in this day and age NHS medical professionals can just shrug their shoulders at us and leave us to struggle on!
• in reply to
You should check with an osteopath or chiropractor whether / or not the falls have caused misalignment of the pelvis and / or hip(s). This was the case with my wife. After having corrected that and given her sports massage by a Sports Injury Clinic, we have been able to address this problem. My wife was using naproxen 3 times per day and 4 times per day paracetamol 1000 mg. Now she is off the pain killers. But we have continued with sports massage AND EXERCISES to keep the muscles relaxed. The problem is that PSP sufferers sooner or later develop stiffness I the shoulders and if there is nothing being done about it, it will cause stiffness in the arms, back and legs. And that will cause pain. So by doing the following:
1. Check if there is any misalignment of pelvis and hips. If there is, go to an osteopath or chiropractor to have it undone
2. Give your mum at least once per week a 2 hour session of massage and exercises to keep the stiffness of the muscles under control. Very often the hamstrings are very tight, the shoulders are tight and if you mum tiptoes, she may also develop shin splints which is very very painful
• in reply to
i believe the original misalignment was caused when she fell on ice nearly three years ago,
her head tilted to the left but we thought this was due to PSP, because of the misalignment she had a raised left hip causing her to have a short left leg.
I have followed this site for a few months and have found it to be very interesting, particularly with regard to damage to the head. My husband has had psp for three years. 39 years ago he had damage to the head and neck after being attacked and knocked down to the floor backwards, he was unconscious for 12 hours. After that he suffered terrible head aches which has gone on for years. He has also suffered bangs to the head. He has terrible pain to his neck left shoulder and left arm (which he can hardly move) He is at the stage where he cannot walk unaided cannot see to read, has diifficulty swallowing and cannot do anything but watch tv a little. Not much fun eh?
My heart goes out to all of you as I can empathise with your comments. I thank you for all your information.
hello teddyheights, do you believe this is what caused your husband's condition? my mother in law fell and was unconscious for about 10 - 15 minutes and her condition came on within four months, just like your husband she had problems with head neck but also her shoulders left hip and pelvis and both feet, but mostly all down her left hand side, we have now started to see a upper cervical chiropractic. do you think maybe your husband has a misalignment of the head or neck, they say 93% of all headaches come from the neck, it, just might be worth looking into if only for the pain and mobility restrictions.
Hi vjessy my husbands left side is also affected his arm, shoulder , left leg etc. he has had. Shoulder ex ray and it showed arthritis so he has had a steroid injection which has stopped the pain for the moment. It was interesting to read that chiropractors and sports therapists maybe able to help, I haven't found the physio therapists to be of any help. I will try the former two as when he is in pain he can't relax and gets really anxious.he also does like taking lots of pills. He is not o n any medication just pain killers when the pain gets too bad.thank you for your input. If I am a long time replying I am new to this type of technology!!!!!!
Hi vjessv I also forgot to answer your question as to do I think the damage to the head caused psp. Personally I think so but the professionals will not say. They say there is no proof.
• in reply toTeddyheights
hello teddyheights, i believe so too, some may think not but we are allowed our opinions, there are different types of chiropractors but in my opinion upper cervical chiropractors would be more precise, they will x-ray the head neck and spine and they will know what to look for, e.g subluxations to the atlas and axis or C1 and C2 of the cervical spine, nerve pressure from bones muscle and ligaments due to falls and head injury,
quote from Erin L Elster 'There are some practitioners who believe that the problem is isolated in the upper neck; that the cervical vertebrae ( the atlas and/or axis ) become dislodged or misaligned by trauma, which can interfere with the central nervous system. where there is pain in my opinion there can be a nerve problem, the whole body can be in misalignment causing the muscles to tighten in the neck shoulder area leading to the rest of the body trying to compensate which then leads to pain radiating through the main muscle groups,
i mentioned in another post that there are 12 cranial nerves that come from the brain through the brain stem into the rest of the body and if you research and find what these nerves control it just might make you think, especially when you read that some of these cranial nerves help control amongst others the eye muscle and movement, facial muscles, the muscles that help you to swallow, don't forget these cranial nerves go through the neck.
thanks for your reply teddyheights
Also i thought this thread was about pain management.
• in reply toTeddyheights
also if you like i will update on how my in law is getting on with her treatment, sorry i will say this, she started with a cane then a rollater to a walking frame but she is now slowly getting back to a cane, and also she doesn't whisper as much nor has to be prompt to speak also does she not stand on the tip of her toes as often, but the pain without pain killers is getting better, gerko thank you for your input.
Thank you for your comments vjessv it is alway s helpful to know how other people are coping with this illness and their strategies . On the ex ray it showed bones fused together , the consultant didn't give us any hope for pain management with the neck, so it seems we have to branch out in other directions. My husband can walk if I am holding him but I have to be on hand when he wants to move to minimise falls. The neck pain is becoming an issue as he is in awful pain and as a result he cannot relax and doze off during the day. I t is also wakening him up at night. W
• in reply toTeddyheights
hello teddyheights, the nerves can become irritated and cause them to misfire so the signals to muscles are lost causing the muscles to tighten, in the neck, shoulders,the arms, hamstrings, the calves, also the hip and pelvis, pain killers will not work, if you take them for long enough you could end up with IBS, ( irritable bowel syndrome ) and thats another major problem to add on top of, if the bones in the neck are fused they can be regenerated, if i am able i will post a video on what can be done to help with this.
Hello vjessv I looked at the video and it was very interesting , I will be looking into it. Thank you very much for your input.
• in reply toTeddyheights
Hi teddyheights, you are most welcome, pain management and mobility are conditions we can address, i am very happy you found it of interest.
vjessv.
As it was stated earlier in this thread that pain is not associated with PSP, is this the reason after having so many falls that the body starts to feel the pain it does? i would hazard a guess that almost all the people with PSP have forward head carriage or a head that does not sit on the spine properly e.g their head tilts to one side.
the more i look at this the more i wonder.
I think you will find that like my mother who was pain free till the end stage (even apparently when suffering massive head blows, a broken nose and shingles over her eye) the contractures of limbs and frozen shoulders etc that come with immobility at end stage are when the pain sets in. Unfortunately at that stage they are not necessarily able to communicate pain but also may feel pain between 'ward rounds' and find it hard to get pain relief quickly and the hospice straight away put my mum onto pain patches as a prevention as well as a 24 tide over. In between she could have other pain relief.
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