My husband suffers excruciating pain - PSP Association

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My husband suffers excruciating pain


Is it just a typical symptom of PSP or are the doctors just missing something. My husband is suffering so much and no one seems to think it's all that important. He has really bad back pain, and side pain that doubles him over in agony. He has had some terrible falls lately, but had him checked over for that. any ideas?

thank you,


31 Replies

hi laroux well ive just had a fall and ended up in hospital i cannot solve the problem of your husbands back unfortunately but do know it takes a hell of a lot of confidence away from you after having a fall it takes quite a few days to get back to normal whatever normal is these days your husband has my sympathy i have had back pain but nothing like your husbands i put mine down to falls etc i do not think people understand that includes the medical profession what its like to have this syndrome let alone the extra things we get as well that might be put down t\o psp because its easier to get out of it that way i told someone at the hospital i had hurt my back she wrote it down but i have never heard anyone ask me about it since so i assumed they put it in the to hard basket and thought silly old bugger \\anyway mate i hope your husband feels bit better tell him not to give in theres a light at the end of the tunnel god bless peter jones queensland australia psp sufferer

JudyJ in reply to peterjones

Sorry to hear about your fall & hospitalization; you were doing so well. Don't give up on that Coconut Oil. Wishing you the best and a speedy recovery.

peterjones in reply to JudyJ

thanks judy for your kind words will catch up with you later on young lady peter jones queensland australia

Kidney infection? Pulled muscle? Just a couple of ideas.....wish that I could help more?!

Good luck


Hi Joan

It looks to me as if you should refer your husband back to the Doctor/Hospital for some thorough checks -- a few days ago you posted that he had severe stomach pains and now really bad back pain. It could be constipation, broken ribs or any number of things.

oxo37 in reply to riosenior



hi laroux its me again i must say that i have had excellant treatment with the follow up of people from the hospital i have been flooded with phone calls from someone going to shower me and a nurse to change my dressings and a physio lady came today a speech lady will come tomorrow and i get showered and dressings changed tomorrow and a new walker will arrive in about 2 weeks time that reminds me i have said ok to speech lady who will arrive same time as shower nurse boy oh boy im going to have some explaining to do to my wife i took the call which i seldom do oh well i can always speak out from the shower if she can hear me \\ i thought i had better tell you this after having a moan about my back and it seemed as though no one cared i think i will take the phone 9ff the hook now as well i said to your husband there is light at the end of the tunnel lets hope it works out for him i have just found faith in human nature take care of yourself you are very important to us psp ===ers peter jones queensland australia this was all from a public hospital as well surprised ==== i am

JudyJ in reply to peterjones

You may have taken a bad fall, but it didn't take you humor. Something tells me your wife will understand about the incoming call...:)

peterjones in reply to JudyJ

judy hi mate no it never took away my humour thank goodness i rely on that to get me through thanks for em mate peter jones queensland australia psp sufferer

laroux in reply to peterjones

Oh my gosh! you having a party in there! May as well make light of the situation. Thanks for your insight, I do appreciate it.


peterjones in reply to laroux

sorry laroux must have got carried away peter jones queensland psp sufferer

Hello Jane

My Father in Law also suffers with a lot of pain especially in his elbows and back due to lots of falls. Thank God since he has started to use his wheelchair he hasn't had anymore falls. He has x rays etc but there is nothing broken etc and the specialist has said that after falls when you have PSP you can continue to get pains. He now takes Co-Dihydrocd or just Paracetamol every day( not the two together) and he feels better. Again I would recommend that you contact PSP Association as they are very helpful and supportive. They wrote to my Father in Law's GP and explained all about PSP and since then we have had amazing support from him. His GP may send him for physio which also can be helpful.



My husband has a pain patch which seems to work but I think you should insist on having a complete overhaul of your husband it's not right he should be experiencing pain like that and not have it checked out.

I have got really strong about asking for things for my husband if you keep quite and good you are ignored


Assuming your hubby has been checked after his falls for problems like rib and vertebra fractures and kidney bruising, may I ask if you think his back and side muscles are going into involuntary muscle contractions? If so, one of the symptoms of some PSP (etc) sufferers is dystonia, and this can cause quite a lot of pain. While I'm not a believer in medications for PSP. when it comes to pain I would advocate some medication. If you can ask your doctor if it is dystonia (and I'm guessing) then they may prescribe a muscle relaxant (but make sure the doctor is familiar with any side effects of such things as anticholinergics used for dystonia, because the side effects can be very bad for PSP sufferers). Even botox has been used to relax muscles but you'll need to check its use in the larger muscles of the back etc.

I do hope you find a solution soon - although PSP itself is not usually connected to pain, those who suffer severe muscle contraction will definitely have pain and it needs to be treated asap.

All the best and I'll be looking on these posts to see if you find an answer soon!

JudyJ in reply to Hidden


What is dystonia?

Hidden in reply to JudyJ

Hi JudyJ

Dystonia is a sustained muscle contraction (sort of spasm) that sometimes causes twisting and repetitive movements or abnormal posture. It's one of the symptoms that some PSP sufferers encounter (and other similar neurological conditions like Parkinsons itself).

I see from your other blogs that you have constant pain. I'm really sorry to hear this. Your neurologist seems to have explained some of the causes resulting from PSP being a movement disorder. I tend to give too much medical detail in chatting on this forum, so please excuse me if this is inappropriate for you. One of the main areas to suffer neuron (nerve) loss is in the basal ganglia, and this region (apart from other things) is responsible for muscle movement and tone and co-ordination. When damaged it creates muscle stiffness (spastisity), especially in the neck and back areas for PSP and the limb muscles in Parkinsons. (In fact, PSP had another name that described this fact about neck/trunk stiffness, it was called nuchal dystonia-dementia - sorry, too much information again!)

I cannot imagine what you are going through, but I wish you all the best and trust that some of your pain relief medication will give some "relief". My wife has PSP and her neck (already with osteoarthritis in the C5/6 vertebra) is really stiff and I use heat packs to help (she doesn't like taking medications, and toughens out the pain - I don't think I could do it myself - blokes are said to be wimps when it comes to pain).

Take care

JudyJ in reply to Hidden

No worries about too much medical information. I've been following your posts with great interest since I started on this site, and find them interesting and quite helpful.

Regarding pain, yes, it is a miserable situation, which is why when he offered the Fentanyl patch I jumped at it.

Also, on PETscan, it showed the basal-ganglia area of my brain abnormal; now it makes more sense.

Best Regards,


JudyJ in reply to Hidden

I do NOT understand, either, how your wife can endure that kind of pain. Is there a particular reason why she won't take pain med? Or is she one of the unique people who have a high pain tolerance level?

Because of my chin-up-head tipped back position, I have a pinched nerve high up in my C-spine. He gave me a mild muscle relaxer which helps, but could use something stronger. I have a long way to go, tho, with this PSP journey, so I understand why he wants those types of meds kept to a minimum for now. I'm also working on this particular issue in physical therapy; it's helping; re-learning how to position my head so I'm looking straight-on. Hard, tho, it feels unnatural. The other option is to get steroid shots at the base of my skull. After all the things I've been thru medically, that one gives me the heebie jeebies; so I tolerate it.

Hidden in reply to JudyJ

I see you had a PET scan and it showed abnormal basal ganglia (if it was a 18F -FDG scan that measures glucose metabolism it would also show up any other areas of possible atrophy - I used to work in a department performing PET scans). The MRI scan on my wife showed the same thing "structurally" as the "Hummingbird Sign" showing midbrain atrophy.

Concerning my wife's pain tolerance - I think it is high.The month before I diagnosed her with PSP (RS) she was diagnosed with 3 hormone sensitive breast cancer lesions and within one week she had a mastectomy with axilliary lymph node clearance. She was in hopsital less than 24 hours and looked after in the home for a couple of weeks by nurses. We were moving home at the time. She seemed to breeze through this (noting she had undiagnosed PSP with falling. In fact she had a broken radius in a plaster splint when she was having the breast operation!). She was prescribed usual post surgery pain medication but she never complained about pain.

After reading your recent posts about your daughter's genetic urea metabolic disorder, I can see you have been through (and continue to go through) many battles both physically, emotionally and spiritually. I don't have words to express my concerns for you.

My wife was born with 2 fingers on right hand and 2 toes on her foot. I think she's done marvellously well coping with me, and our 4 children (and 10 grandchildren). She too has a strong (Christian) faith, and this helps with her disposition towards life and death.

I'm rambling .....back to your seems you have retrocollis where your head is drawn backwards. This used to be described as typical with PSP (and some thought it added to the reason why falls were backwards). My wife has the typical Parkinson's antecollis with a forward bent neck (and this also occurs regularly in PSP and sufferers can still fall my wife last October, falling on her bottom and fracturing her T12 vertebra and landed up in a brace for 3 months - all because of the problems of PSP impulsivity sometimes - did not wait for me to help her!). These terms for the neck are used generally, but often they imply dystonia (twisting and spasms) of the neck and not just "stiffening".

Finally, I read about your daughetr's (and your) "run-in" with a person on the phone from Mayo (I am from OZ so I assume you mean Mayo Clinic). I appreciate you have learnt which battles to fight and which to leave alone. It certainly becomes tedious and frustrating trying to correct the wrongs that others (even health professionals) heap upon us. Personally, I suppose I couldn't resist ringing their "complaints department" (they must have one) and suggest the person in question be "retrained" and the reasons why!

All the best and take care!

JudyJ in reply to Hidden

Thanks for sharing all of this information about your wife; what a hard road for her and you. There just are no other adequate words.

Thanks for taking the time to understand a little more about the girls Urea Cycle, OTC. Those were indescribably hard years trying to get them diagnosed, tho their symptoms mimicked each other. Katy's was evident at birth tho never tested for; Missy's began out-of-the blue on a sunny Saturday morning when she was 18 months old. It was one of those pivotal days life changed forever.

Can't tell you how many times I took them to the ER at Children's Hospital in St. Paul when they were sick from OTC. Sometimes they were kept a few days to rehydrate; others sent home with flu-like symptoms. Katy had cluster seizures during her events with OTC; could have 100 or more a day. Was put on a seizure med; didn't help; was told we 'might never know what's causing them'. I said that wasn't okay with me. It's such an extra burden when the Docs start scrutinizing the parent because you know without a shadow of a doubt something is really wrong, but they pass you off as a hysteric rather than do more testing on the child.

When Katy was in high school, I got a phone call from her school she slipped on ice on the sidewalk and hit her head, bounced it, then hit again. She was rushed to the ER at Children's. Many years later, with more knowledge and experience under my belt, I insisted the ER do a blood ammonia test on her, as a traumatic injury can get the OTC going and raise the ammonia level to a toxic level. Guess what? They didn't know how to do it, stated they've never performed that test, and weren't going to do it. So all of those early years I ran them back and forth to that ER were in vain. Because of it's rarity, they weren't even checking for it; what a waste; there are no adequate words.

As to complaining about insensitive treatment received by a health care provider at any level, I'm no shrinking violent, but learned over the years I couldn't confront every instance because they were too frequent. And when I did, knew I had to be at my best because the girls were watching and what I was doing was teaching them to self-advocate. There were just those times I was on the edge of losing it so I kept my mouth shut.

We live about 90 minutes, including parking, door-to-door with Mayo in Rochester; been going down there since '96; had it down to a science.

During one trip down around '04, 2 years divorced and a quite stressed out single parent raising to young girls with special needs, I hit construction traffic that set me way behind schedule; by almost 30 minutes. Should've checked that out the night before, but was having a hard time managing as it was.

Once I got thru that mess, I called his office, letting him know we'd be 20 minutes late (I was booking it to make up for lost time.) (And, how many hundreds of hours did we wait in doctors offices because they were running behind?). I thought we'd be okay.

Got to the Mayo complex of buildings and all the parking ramps were full which was unusual. Dropped the girls at the front door, told them which floor to go to, and check in. They were younger & hesitant, but off they went.

Had to park 5 blocks away and hoofed it to the Mayo building and to the right floor. His nurse took me back right away. As soon as the door open I felt this smack of dread and saw both girls with their heads hanging, tearful.

Well, I got a verbal, derogatory dressing-down by this Doc far and away from anything I'd experienced before for being late. I was already stressed and felt my eyes fill with tears as I tried to explain I was doing the best job I could, etc. He went onto berate me in front of the girls who were now sobbing loudly. Then I was sobbing loudly because I was so anger. He didn't make eye-contact with me once, nor showed an iota of empathy or understanding.

So, to my shigrin and embarrassment, me and the girls left his office sobbing loudly w/o any examination. I asked someone where the patient representative department was, and there we went. The staff member spent time with the girls first. She had them draw pictures of whatever came to mind about what happened. Katy drew a pic of a Doc in a white coat with fangs that had blood dripping from them down his face. It spoke for itself.

So the staff member apologized, stating his behavior sure sounded inappropriate, told me my options, and said she'd visit with him.

Much to my surprise, later that evening, that Doc called me at home. To apologize for his behavior. Went on to say his wife gave him an ultimatium to move back to Boston or she'd divorce him, as well as other personal problems. He asked me for the favor of dropping my complaint so it wouldn't follow him and he'd make sure his notes of that day were expunged. I fell for the sweet-talking, human-sounding doc, and called the next day to drop the complaint.

3 weeks later, and after he was gone, the Doc sent me his notes of that visit that were unedited and just as disparaging as the day we were there. Grrrr. He was slick.

It's taken me a lifetime to find a circle of Docs who work with me on my stuff, and the girls lifetime to work with them on their stuff. It's totally okay and I advocate visiting at least a few, if it's a serious situation, because knowledge is knowledge, but how they interact with you is just as important.

Okay...whew...think I'm done with my weekend postings. Thanks for your insights, your sharing, your interest, patience, and concern.


teena2 in reply to JudyJ

Hello Judy,

I don't often write on the forum any more since my Chris died last June, But on reading of your experiences with the medical proffesion my heart went out to you. i was so incenced by the doctotor in question that I wanted to get to him and give him a verbal tongue lashing. Wouldn't have done any good and it certainly wouldn't have done me or you any good, so I thought I would share my daughter's philosphy with you. Karma will take care of this man. You may never know what has happened to him but be sure that it will. We (my daughter and I) have been fortunate in being aware of the Karma (I interpret it as punishment, or what goes around comes around) experienced by some culprits and it is so rewarding becasue you know that you have not even wished it on the person concerned and you have given it up to a stronger,higher level than you. Hope this doesn't sound too airy fairy for you, My thoughts are with you.


JudyJ in reply to teena2

Thank you; I feel very touched by your response; it gets tough out there but being manipulated, particularly by a medical professional, is repugnant.

No, your response is not to airy fairy for me:) I'm airy fairy myself.

Karma is a powerful thing. It's the same to me as 'letting go, and letting God'; still practicing my timing on that; it's a process:)

Hello everybody I wish I could be of practical help but just want to say keep fighting for the help you so greatly deserve.My sister had PSP and in those days very little was known about it. Now we who do not have the daily fight must put all our energy into finding a cure. I salute you all xxx

JudyJ in reply to flicka


I'm curious but don't want to be intrusive. When was your sister diagnosed with PSP?

flicka in reply to JudyJ

Over 20 years ago when not a lot was known about PSP She was most anxious that people should be informed, helped and also that there should be more research. She was a courageous and good woman. I shall continue to listen to your stories please. Do you get any help from the PSP association? Every good wish

JudyJ in reply to flicka

That's astonishing. At least I think so. It's so hard to diagnose even with advanced medical technology.

Definitely get referred back specifically for the pain. Pain patches are a godsend for PSP as they deliver a constant dose so if the pwPSP are not able to communicate their pain there is still relief for them. Extra pain relief can be given whilst using them and your GP/palliative care team/Parkinson's nurse can all sort this out too.Mum's shoulder and hip became painful once she was bedbound and the patches made a huge difference.

Best wishes Diannex

I've been on a pain patch since 12-19 & it was one of my best days in recent years. He's bumped it twice, by 25 mg. but won't go higher; says it will cause more imbalance problems as it is very powerful.

Unfortunately, your body becomes tolerant of it and wants more, so I am again experiencing pain 24/7, sometimes acutely, mostly managable.

I just saw my Neuro a week ago and asked him why my pain level has spiked and stayed consistent, as well as new pain in places that don't make sense. He explained to me again that since it's also a movement disorder, it causes internal organs to move improperly (over time) but especially the muscles, anywhere, with cramping. And the tendons and ligaments start to become sore due to movement issues as well.

He said any pre-existing condition, i.e. arthritis, etc., will worsen along with the PSP advancing. I wish I had better news. Chronic pain is hard if not impossible to deal with at times. Love, soothing verbal support, and any 'tool' you can get your hands on to help him with, go for it. At an arts and crafts fair, I found in a variety of sizes velcro 'pillows' that are filled with unpopped popcorn. Use them all the time on various painful spots. It helps, don't know why.

But mostly, I agree with everyone else. It really sounds like he needs a thorough going over by a Doc as well as help with pain management; I'd particularly advocate for that. It won't fix anything, but it gives back some quality of life.

Hang in there and wishing both you and your husband the very best.

Judy J

JudyJ in reply to JudyJ correct myself....they are not velcro pillows...wouldn't be too comfortable, would they? They're pillow-sized with a plush covering filled with unpopped popcorn. The smaller ones can even be heated in the microwave. The popcorn doesn't pop because there's no oil. But they help. Guess I don't need to know why.

My husband too is a PSP sufferer. Last summer, I noticed his hands starting to become claw like and he was having trouble using them eg holding cards etc. Last fall, he began to experience pain in his hands and arms. It was like muscle spasms or cramps. It became so excruciating that he was in hospital for 6 weeks as medical professionals tried several medications for pain and tests to find out what it was. We found out what it isn't! The doctors call it neuropathic pain and feel it is part of his disease. Since then he has been on many medications to control pain. Some days are better than others. He is on Gabapentin now and they kept increasing the dosage until we started seeing some results. He is not pain free but at least the pain can be controlled with hydromorphine when he has an episode. Lately he can have a good day without being in pain. Botox has helped the claw-like fingers but doesn't seem to help the pain. I share this with you so that you and others may relate someway with our experience. As a care giver, I have found this to beone of the hardest things to handle as I feel so helpless when he's in pain. All the best to you.


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