PSP Association
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Pain Poll - please help - Thanks

Could folk please post and say what diagnosis is involved with themselves or their loved one. Whether it is a clear diagnosis and to what degree pain is an issue. Also what treatment is being taken for it and finally what Parkinson's meds. are being taken if any.

So a reply might be "PSP possibly CBD pain in arms and neck - severe. Levodopa".

I have been reading up on pain a little and I am trying to get an idea as to what might be relevant to post here.

Thanks

Kevin

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PSP. Took sinemet throughout. No problems with pain.

Jean xx

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PSP- pain in neck- moderate; no PD meds

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PSP. Pain in feet ankles arm hands and neck

Taking Oramorph. Ibuprofen co codamol and CBD oil

Still complains after most except mix of CBD oil and oramorph

Helen xxx

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Kevin no medication for PSP , doesn’t really complain of pain, he sometimes says his hands hurt, at the beginning his neck and ankle no medication xxxxx

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Larry has neck pain. His head is forward due to his hunched shoulders. The massage he gets once a week gives him relief for a day or two. He’s had neck and shoulder pain for most of his life. Hard to know what is PSP.

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PSP - despite lots of falls never feels any pain. Has had three lumber punctures last year and no reaction. Tried men's in past to no effect

Xx

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Hi Kevin!

Diagnosis: PSP-RS (Richardson Syndrome)

- No pain derived from the disease. Only pain derived from a small blow or contracture.

- Sertraline for depression and Lorazepan to sleep.

- Vitaminic and mineral complex (30 days every three months).

- He has not taken Levodopa.

Hugs.

Luis

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PSP responds to Sinemet+. No major pain occasionally complains of Neck pain and general aches and pains post falls. Treated with Paracetamol, Naporxin and weekly massage

Tippy xxx

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PSP. Pain in back from falls. Pain in hands (arthritis?) Takes riponerole for “restless leg syndrome”. Just weaned off of sinemet after six years. Just beginning CBD oil.

xoDorie

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CBD, pain seems to be related to the fact that she leans a different direction each day and strains her neck and back. Since the lean varies, it goes away. Does not appear to be severe, but communication ability is lacking. Over the counter meds given (acetaminophen or ibuprofen) when pain seems present. Difficulty swallowing pills.

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PSP — no significant pain until very late stage. Earlier he took paracetamol, but wasn’t very articulate about what pain he was having or why it helped. Now muscles are rigid in foetal position & he has knee and back pain, controlled by Fentanyl patches, anti-inflammatory ointment, and diamorphine top-up if necessary. (Palliative care stage.)

Was taking sinemet until he went into hospital last summer. Not sure now.

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PSP, possible CBD

immunoglobulins found in lumbar fluid thought to cause significant inflammation .

He clearly suffers from pain from time to time, but does it report except for facial grimaces and sudden moans. Moving him often causes discomfort . He does have marked rigidity on the right side and residual pain from a torn rotator cuff. I give him ibuprofen when I feel he’s uncomfortable . When he is asked by his doctors he does not report pain .

He is taking one dose a day of carbidopa/levodopa . We will be discontinuing that completely.

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CBD a bit of pain in left wrist, no Parkinson meds........

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CBD pain in neck, moderate. No meds

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PSP,no pain and no meds except for glycopýrrolate for saliva

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PSP was first diagnosis. No pain. Sinemet for a few months but taken off as no improvement and long term side effects could occur.

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Psp - fentanyl patches for neck pain, 50mg I believe with paracetamol every 4 hours as this compliments the patches

I could be wrong on the mg and can check if you need

X

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Hi Amanda

No that's great thanks.

I am just trying to get a rough picture. It appears there can be two distinct sources of pain. When I have a bit of a picture I plan to do some serious reading. I already have some good published papers on it.

Its not going to change the world, but my hopes are that we can get a slightly better understanding and have good questions to ask when we see the movement disorder specialists or neurologists.

xxx

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Once again Kevin, I can only say what a star you are! I’d rather read a funny and romantic story lol x

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Go Kevin Go!!! (Cheerleader emoji) 👍🙆🌟

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PSP sertraline, sinemet and cbd tablets. Doesn't complain of pain but has spasms in legs and hands. X

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Hi Careenh

Could you tell me what the CBD tablets are?

It would be very helpful.

Thanks for coming back.

Sorry to pester.

Best

Kevin

xx

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Hi Kevin. We are using them to help with anxiety. They seem to be helping mum a bit, she's calmer for about two hours after taking but then they start to wear off. Xx

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Thanks :)

sorry they don't work better. This illness is hard.

Wishing you both a calm evening.

Warmly

Kevin

xx

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PSP pain in neck jaw and shoulders comes and goes unbearable Sinemet. See my post pain in the neck

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PSP- severe pain in the neck if his neck even moved lightly. Hurried thro his meals (when feeding self and when being fed) because difficult for him to hold neck erect, and when moved PAIN!!!.

Used a soft neck brace but it bothered him too, although alleviated pain to some degree because of less neck movement.

He tried Botox and acupuncture....Botox did not help and acupuncture a little.

When he got PEG installed, a few days of pain in the stomach. The only time I saw my son cry with PSP was the night he came home with PEG.

I think that if he had NOT suffered from the severe neck pain, for him PSP would have been easier to endure. The neck pain started early in the disease.

My dad used a Fentanyl patch for his bone cancer....I wish I had thought of that for my son's neck pain (as someone mentioned on this post).

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PSP. Took carbidopa-levodopa and amantadine for the 6 years since diagnosis. No problems with pain.

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My husband has Madopar. He has pains in his back, thighs and his knees. He has ibuprofen cream for the painful areas. He was diagnosed with PSP 18 months ago. He has citalopram at night.

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CBD - pretty clear dx - no pain - no PD meds ever prescribed.

Thanks Kevin!

Anne G.

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Kevin, See also 41273416a's reply to Evertonian in Pain In Neck...He hasn't replied here yet.....

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PSP with FTD (BV) overlap (according to our new expert)!

Amantidine 200mg mane (Levadopa - Madopar prior to this drug, didn't help)

Lamotrigine 75mg BD (Not for epilepsy but to help with Behavioral changes)

Procyclidine Hydrochloride 2.5gg BD (to reduce newly presenting Dystonia)

No pain.

Antidepressants

Multivitamin mane

Omamprazole 20mg BD for indigestion

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Diagnosed psp pain in neck and knees takes cocareldopa paracetamol ibuprofen lanzopradole trazadone .

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raincitygirl l have, on another note my wife also has Atypical facial pain, she is waiting to see the Maxillofacial pain team.......it's a nightmare to see your loved ones is so much pain and can hardly talk with a very dry mouth. There's also the possibility of a peg being fitted. Why why why why why !!!

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PSP - sinemet until recently (No effect). Limited pain (but high pain threshold), end stages = pain in rigid hands fingers and wrists

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CBD. Very rigid and immobile with pain on any forced movement. Sinemet, matrifen and paracetamol. About to try CBD oil.

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CBD. Slight pain in right foot but mostly relieved by Botox injections. No meds except SSRI antidepressants.

Richard

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PSP. Tried sinemet and other PD drugs, none made any difference. Has liquid paracetemol daily but only because P is unable to indicate if he has pain. His T2 diabetes has `gone` because he`s lost so much weight. Has B12 injections every 3 months.

xx

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Hi folks.

Thank you for your great responses.

So much for the article in "Neurology" that PSP folk seldom suffer pain!

This is a distillation of your responses from here and elsewhere on the forum. Each has a clinical basis for treating pain:

Dopamine 'management'

Massage

Minor pain killers; Paracetamol; nonsteroidal anti-inflammatory drugs

Anxiolytics and antidepressants.

Botulinum

Strong pain killers opioids etc

(As well as the odd thing like Amantidine - Which treats tremors and rigidity - and the Medics aren't sure how it works - but it often does)

Baclofen pain, and stiffness commonly used in the treatment of MS.

There will be more.

It's clear that what works for one person does not necessarily work so well for the next person. Additionally it appears pain can have different causes. (More on that when I have done more reading).

Now, I am not playing Doctor here. In the same way I would not expect you to fly in a plane I had just fixed using my copy of "Fix your Airliner for Dummies".

What I am going to try and do is read up on these interventions and then try to give simple descriptions based on research papers. Hopefully that might give us all a bit of a pain vocabulary to use in discussion with your Doctor.

It will take a week or too.

Thanks again.

Best to you all

Kevin

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You are an absolute star Kevin. Thank you for this🖒❤

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Mum officially diagnosed 3 weeks ago through MRI it’s her 3 scan since PSP suspected but first time something has shown up. ( I would suggest she had it around 5 years before it was suspected.)

Pain in neck, shoulder hips, wrists knees and ankles. Currently managed on cocodamol 2x 4 times a day.

Other medication includes:

Amantadine to help with coordination, prescribed from consultant. Apparently this is usually used to treat infections. I haven’t noticed a difference but Mum says she has.

Oxbutynin - relaxes bladder making her need for the toilet through the night reduced from 6-3 times.

Mirtazapine - anxiety

Lorazepam - anxiety and sleep.

Good luck with the research Kevin x

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Definite PSP and CBD compromising his left arm. Had to continue levodopa/carbidopa to be in the clinical trial where he has Abbvie infusions. He says there is no pain accept for the falls.

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Thanks Donnause

Do keep us all posted on Abbvie.

Is that for the CBD or arthritis?

Wishing you both the best.

Kevin

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It’s for the psp, does not seem to be helping the CBD although the disease has not progressed to any other limb. Some improvement on the psp and no further progression of psp either in the 11 months he has been receiving the drug.

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Fantastic!

This is such good news.

Hoping the trial continues to work for him.

:)

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My father was diagnosed with PSP in 2014. He does not complain of pain, even when he falls; he rarely complains of pain.

Nowadays his illness has worsened and his neck is hurting because he arches forward with his neck. This complicates eating, swollowing, sitting straight.

We live in the Netherlands and overhere they don't subscribe medicine for PSP, not for coordination problems or restlessness, sleeping disorder or any symptom of this disease.

If my father is in pain, we give

paracetamol as a pain reliever. He gets fysio 2 times a week and botox for overproduction on saliva.

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Hi Marian

Welcome to the forum. I am sorry to hear about your father.

Yes, in the UK too it is common that the only meds. given are those to make the person comfortable. That might include a benzodiazepine for sleep, and anxiolytic, or antidepressant. Things like that.

I'm a great believer in physio. Its worked wonders for my wife.

Thank you for chiming in.

I hope we will see more of you.

Best to you both

Kevin

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Diagnosis: PSP- Non Fluent Aphasia (variant)

No pain.

Meds: Sinemet/Co-careldopa, Citalopram and Clonazepam (sleeping)

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CBD pain in left leg and arm . Left arm is definitely alien limb now . Pain relief zapain but more recently diazepam has reduced tremors and pain to

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Hi Kevin, originally diagnosed CBD but no real pain. Now just think it’s Mild Parkinsonism still no pain and not having to take any meds. On contrary, have come off atorvastatin and not feeling like a zombie anymore . Gradually coming off Bisoprolol and able to move better. Did have tightness and achy neck but have been having regular massage once a week which is gradually releasing the stiffness. Hope this helps.

Best to you and Liz have been reading your posts avidly but still feeling in denial till I see consultant again in August!

Jaynex

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Hi Kevin, I think of all the posts I've read here, my husband has the most pain. It started in the beginning stages 2015 or earlier a tingling and numbness through his whole body. As time has went on that has stayed on going, also his left hand has been hurting for a couple of years keeps getting x rays, blood work ect... he keeps thinking it's arthritis. Very little arthritis shows up in tests. Prescriptions are: Lyrica, diclofenacsodium tablet also diclofenac sodium topical gel sodium , clonazepam when needed to sleep. Nothing really helps, but he had cortisone shots in both hands last week and that's helped more than anything. The reason for the shots was the pain got unbearable and went to both hands, could not sleep because of pain. We have been to the best of neurologist many and they all do not know what to say. Same with general doctor. At this time he is doing pretty good with pain because of the cortisone shots, so hopefully things are going to stay going good. He is a very active man still even though he has this awful disease. I would say he probably has PSP-Parkinsonism and maybe overlapping with CBD also. Just completed Brain donation form for future with the Brain Support Group. Reason is his is so different than others a lot of the time in a good way, but the pain is in a bad way. I just have to know in future what he really is struggling with for myself and my children. Glad you are looking into this for all of us.

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Hi Yellow Marlene

Thanks for such a full post. Have you asked your Neuro about it being a Parkinson' type pain? Was it the neurologist who thought it might be artritis? What did they say to both of these?

If a good neurologist doesn't know then its unlikely I will find something, but as I read I will keep you in mind especially.

It sounds miserable for him - I am so sorry.

Best to you all

Kevin

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Neurologist have never said Parkinson type pain. I don't know much about Parkinson's I think I need to educate myself more on it. He has never been diagnosed with Parkinson's like so many at the beginning. We got a early diagnose compared to others. On the other hand from the beginning the diagnose was said to be different than any classic PSP that said from every neurologist we have been to. I hate to complain because he is still so active. He's building the BEST heated dog house you'll ever see as I write. It's taking him close to a week to build, in the past it would of taken him a couple of days. (but is it every nice. Lucky dog!!)

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There are a number of variants to PSP - all in the same family. Often it is only after death that they can be sure which. It may not matter much to the person anyway as the only treatments are to make the person more comfortable.

Lucky Dog!

Will there be a built in sausage dispenser and T.V. as well ;)

Wonderful!

Thanks for the smile.

Wishing you both the best

Kevin

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Husband diagnosed first with PD, then PSP approx 6 months later.

Took Sinemet for about 6 months, but stopped due to side effects. No other PD, PSP meds at the time.

Complains of neck pain 2-3 x week.

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Hubby is on Modopar , has back pain, and in his knees from arthritis which is made worse by his head drooping and he has a lot of freezing episodes so stays in the same position sometimes for 10 minutes or more. ( I made him laugh this morning as I said he looked like a chicken waiting to have it's head cut off ! )

Kind regards

Dawn

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You made me chuckle - thanks :)

And thanks for chipping in.

:)

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