Relentless Discomfort

This subject has probably been covered many times before on the forum. I’m just looking for a new perspective. I would describe it more like discomfort than pain but it is constant and it is very difficult to find any relief. I’m constantly moving from chair to chair standing up walking around but whatever I do discomfort follows. This is also affected my mobility and whereas I used to walk miles, I can barely walk to the end of the street without experiencing pain, it usually starts on my left big toe then spreads to my foot and ankle and the rest of my leg. Lying down sometimes gives some relief but then when I am in bed I can be up several times a night due to pain and discomfort. I take a mixture of rasagiline and madapor. When I first went on madapor, I felt a significant positive difference but after a few months that benefit wore off and even though my dose has been increased a couple of times it doesn’t appear to be working anymore. I am still trying to keep my golf but it is the walking part that scuppers me sometimes. When I first discovered madopar it felt like a miracle cure however, unfortunately it wore off fairly quickly.

Hello Gordo, sorry to hear you’re having such discomfort. It may be others on the forum have some ideas that can help, but it may also be worth getting in touch with your GP or healthcare professional to talk this through. Our helpline, which includes trained nurse advisers, are also around from 9am tomorrow on 0808 800 0303 and would be happy to chat this through with you. best wishes,Lucy - moderation team.

Have you seen a physiotherapist, specifically – a neurological physiotherapist? Also, I wonder if you need an increase in Madopar. Maybe you should see your consultant or Parkinson’s nurse?

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Thank you for your response much appreciated
I take one 6mg ropinirole in the morning and one 2mg in the evening. Three 25/100 co beneldopa during the day and two co beneldopa slow release 25/100 in the evening (recently doubled from one) doesn’t seem to be helping. Don’t know if that seems like a high dose or not.

It is about the same as me. But that’s not relevant because we are all different. Infinite varieties of PD, infinite drug combos.

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Sounds possibly non PD related, and is in fact Sciatica?

Thank you for your response I am now looking into that possibility it could be that I’ve been suffering for two years just assuming that it’s Parkinson’s related thanks for the tip

I remember years ago having to wait for ages for a cab at my local hospital. I hate sitting down because of my akathisia. Eventually the security guard came over and asked if I was in pain. No I said just very uncomfortable. I think I first experienced it when my gp have me a couple of antidepressants Sertraline (13 days) then Amitriptyline (2 days). Months afterwards I noted in my diary, “ Torture watching tv. …fidget, fidget”

Pain in Parkinson’s Dr KR Chaudhuri www.parkinson’
Akathisia or a sense of restlessness may also cause pain. This may often occur at night and people with Parkinson’s may find it difficult to sleep because of fidgeting in bed and a desire to move the limbs. Akathisia may be the consequence of drug treatment for Parkinson’s. This pain is difficult to describe and is felt as a discomfort rather than pain. The discomfort usually involves the legs, and people who experience it may wander around to obtain relief.

Pain in Parkinson’s Disease Blair Ford Mov Disord 2010; 25 Suppl 1: S98-103

In recent years, descriptive surveys of non-motor symptoms in PD have led to a classification of painful sensations into one or more of several categories: musculoskeletal pain, radicular or neuropathic pain, dystonia-related pain, akathitic discomfort, and primary, central parkinsonian pain

Pain syndromes and discomfort in Parkinson’s usually arise from one of five causes:
(1) a musculoskeletal problem related to poor posture, awkward mechanical function or physical wear and tear;
(2) nerve or root pain, often related to neck or back arthritis;
(3) pain from dystonia, the sustained twisting or posturing of a muscle group or body part;
(4) discomfort due to extreme restlessness and
(5) a rare pain syndrome known as “primary” or “central” pain, arising from the brain.

Akathisia : No discussion of physical discomfort in PD is complete without a mention of akathisia, or restlessness, a frequent and potentially disabling complaint. Some patients with parkinsonian akathisia are unable to sit still, lie in bed, drive a car, eat at a table or attend social gatherings. As a result of akathisia, patients may lose sleep or become socially isolated. In about half of the cases of parkinsonian akathisia, the symptom fluctuates with medications and may often be relieved by additional dopaminergic treatment.’s_disease & select “Download full-text PDF”
Akathisia in idiopathic Parkinson’s disease. Lang AE, Johnson K (1987) Neurology 37:477–481

To our knowledge there have been no previous studies of akathisia in idiopathic Parkinson’s disease
Interviews of 100 patients with idiopathic Parkinson’s disease indicated that 68% periodically experienced the need to move and inability to remain still, usually because of well-defined causes such as parkinsonism and sensory complaints.
Twenty-six patients could not explain the inability to remain still, a state of true akathisia.

The term “akathisia” (from the Greek, meaning “not” + “sitting still”) was introduced by Haskovec [1866-1944] to describe the inner restlessness and inability to remain still experienced by patients with Parkinson’s disease…Trousseau is said to have described Napoleon III’s parkinsonian chamberlain who, against all the rules of court etiquette and even in the presence of Napoleon himself had to rise from his seat every five minutes and walk about.
Akathisia and restless legs Perminder Sachdev Cambridge University Press, 1995
p.15 The akathisia of Parkinson’s Disease
Charcot [1825-1893] referred to the cruel restlessness suffered by some of his parkinsonian patients
Gowers spoke of the ’extreme restlessness…which necessitates… every few minutes some slight change of pressure

Drug Induced Movement Disorders edited by Stewart Factor, Anthony Lang, William Weiner 2nd ed. 2005 Blackwell
p.274 Patients with akathisia frequently complain of an unbearable inner torment and beg repeatedly for relief. There is evidence that akathisia may be associated with suicide. Many patients do not know how to describe what they feel, and they may use a variety of terms other than “restless”; they may complain of “jitteriness”, “a tortured sort of feeling”, “nervous”, “about to jump out of my skin”, “all revved up” …The most preferred position was lying down.

please note the link for Dr Chaudhuri’s article on Pain in Parkinson’s does not work. The current PDUK website information on Pain in Parkinson’s does not mention Akathisia. There is no official PDUK information on Akathisia.