What do symptoms feel like?

About Parkinson's and health Newly diagnosed
1

Hi.

Second post on the Forum. It’s a great place to read about almost anything PD related.

If you are reading this you’ll probably think it’s a strange post, however, as I hope I’ll explain, there is a fairly straightforward reason I ask about the title in the topic.

I have been diagnosed with ME/CSF since 1999. I will not go into my symptoms as many of you will have experienced the same or similar with PD. I have ‘ups’ and ‘downs’ in my symptoms, sometimes feeling unable to function, sometimes feeling ‘normal’. I started a ‘down’ period with my CFS in May of last year. I got through the summer then around September/October I felt a change in my body and my symptoms. The change in symptoms included even worse fatigue than I had had previously and extreme tiredness, although at that time I was sleeping quite well, and an increasing ache in my upper arms/shoulders and neck. In December I made one of my frequent visits to my GPs surgery and was examined by a GP. As she held my hands to test my arm movement she asked if I knew I had a tremor. I said I didn’t. She referred me to my local NHS neurological service and was put on their waiting list.

It’s probably at this point I should mention that back in 2021, I had been diagnosed with REM SD, however, as I had no other symptoms, although the link with PD was mentioned, it was thought it was not relevant at the time. At this time I was taking 6mg of Melatonin at night

Between December and March this year, the symptoms of REM SD got worse. I decided to see a neurologist privately. I got a very quick appointment with the neurologist who had diagnosed my SD back in 2021. After some physical tests he came to the conclusion that
It was likely I had early stage PD. He did not feel medication was necessary at this time and he said informing the DVLA would not be necessary. He also added Clonazepam.

A couple of weeks later I saw my GP about the continuing pain I was having in my shoulders and at this consultation, after having read my consultants letter, she expressed doubt as to a diagnosis for PD. This caused me a lot of confusion and anguish especially as I had thought my SD and the finding of my tremor was going to be a good indication that I did actually have PD.

I am still awaiting my NHS appointment where, hopefully, I will get some indication as to the likelihood that either do or do not had PD.

Sorry about all that background information folks.

With this doubt about me having PD I am beginning to be afraid that my symptoms are just a worsening of my CFS. This would be a huge let down, believe it or not, as CFS does not have any known cure, like PD, but there is no specific medication for the symptoms. I thought at least if I had PD, and the time came to take medication, this would at least help. Also, I have read that exercise for people with PD is very good for the condition which is ALMOST the opposite approach to exercise and CFS.

What I would like to know, if it is at all possible, for people to describe how they feel on a day to day basis with the ups and downs of the symptoms of PD. I am obviously aware of tremors, fatigue, muscle stiffness and pain, sleep issues and tiredness. Any information you can give me on any other symptoms you experience would be gratefully received.

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Good morning MtheP… Welcome to the forum again. I have just written a long post on “Fatigue & Sleeping pills” … would you like to read as some of what I wrote is relevant to what you are asking about.

As I said I have Atypical Parkinson’s & Neuropathy & I too find exercise makes me feel worse as does sitting down, standing still or walking. That only leaves lying down which is a blankety blank way to live my life. So I keep as active as possible & play Indoor Bowls 3-5 times a week [which is about as inactive as you can get sport].

I always find that if I have a problem I ask my Parkinson’s nurse who suggests I talk to my GP who suggests I talk to my Parkinson’s nurse.

Suggestions … You might have a Datscan. This is probably the most likely indicator of Parkinson’s. I had one which was positive for Parkinson’s.

The other thing they do is to treat your symptoms with Parkinson’s medication like Sinemet or Madopar, if this works then you have Parkinson’s. I do find Sinemet has helped me. But I take so much medication & I wonder whether the side effects are worth the effort.

Have a read of my other post on Sleeping & do get back to me with any questions / opinions you may have.

Welcome to our weird World.

Best wishes
Steve2

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Hello again MtheP … I have just read up on ME/CFS … Now clearly I tick most of the boxes to say I have ME/CFS as do most of us on this forum. Might the diagnosis of ME/CFS be a lazy diagnosis option for a doctor ?

Diagnosing ME/CFS

There is not a specific test for ME/CFS, so it’s diagnosed based on your symptoms and by ruling out other conditions that could be causing your symptoms.

The GP will ask about your symptoms and medical history. You may also have blood and urine tests.

As the symptoms of ME/CFS are similar to those of many common illnesses that usually get better on their own, a diagnosis of ME/CFS may be considered if you do not get better as quickly as expected.

Find out more about diagnosing ME/CFS

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Hello MtheP
Since reading your post I have been wondering if I can reply with anything remotely helpful, In the end I decided I would just go with it in the hope that you maybe will be able to take something from it even if it is difficult to know what thar may be lol.
First thing I can do is to confirm what you have read about exercise. Next to medication, exercise is the single biggest thing that you can do to help manage the symptoms of Parkinson’s. Whilst any exercise is better than none the recommendation is for 159 mins p.w and be quite intensive to be most beneficial.
Second the symptoms you mention in your post are amongst the most common but Parkinson’s generally is not well understood and much of that is down to I think, that it’s severity and impact can vary even where several people have similar symptoms - it is often referred to as an individual condition - and as such makes your question hard to answer. There are in fact some 40 symptoms both motor and non motor. No assumptions can be made about what or how symptoms may develop. For example the one symptom people know of if they know anything is tremor. I have Parkinson’s but I don’t have tremor.
A common characteristic is the variable nature of the symptoms and that can be from day to day but also during the course of the day so it can be difficult to know where you are on any given time.
Many of us find non motor symptoms harder to manage than motor ones for perhaps obvious reasons but for me it meant coming to terms with a side of me I didn’t recognise when i developed what were in effect panic attacks. i was not the sort to panic and the first time it happened was simply shocking. These days I accept it, can recognise potential triggers and can mostly manage it - but even now several years on, it still doesn’t feel like me.
When you live with Parkinson’s many of us live with a gradually shrinking world. Things like low speech volume, drooling, mobility problems, apathy, incontinence - I could go on but the truth is virtually any of the symptoms can impact on your general interaction because it all takes so much much more effort and energy etc
Like the condition itself, symptoms may develop slowly and because the person may be able to adapt to the change, it may not even be noticed for a time if at all.
Finally to raise a point you may not have considered. I have come to realise just how many of us live with a second diagnosis; I, myself, also has normal pressure hydrocephalus and I have a shunt. Might it be possible you have dual conditions and that is muddying the water over whether or not you may have Parkinson’s ……just a thought.

As I said at he beginning, I’m not sure you will gain much from what I have written but maybe something will resonate with you.
Best wishes
Tot

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Hello MtheP
Welcome, like Tot’s eloquent reply I am not sure mine will aid you other than to gather other’s experiences.
My Husband has PD and I have CFS. My husband was formerly diagnosed 12 years ago via a DAT scan which I believe remains the only diagnostic tool available for this purpose. I suggest you request one, if you can afford it seeking one through the private neurologist you saw maybe your quickest answer.
Particular early indicators of PD, prior to my husband’s diagnosis, were a loss of his animated facial expression, his loss of sense of smell plus periods of feeling off balance generally similar to having labyrinthitis where he’d feel nauseous, times when he appeared blank snd staring through his eyes. He too had been previously diagnosed with REM sleep disorder. Simultaneously he also developed pungent sweating and an element of drooling coupled with a weakness in arm and leg on his left side. He did latterly develop a slight left hand tremour which is not constant but noticeable when he is anxious about something. I would add here that it took 2 visits to a neurologist over a 3 year period before we were able to be heard and a DATscan provided the diagnosis.
My husband was, however, an avid fitness/sportsman and was still able to cycle 10-20 miles 2 or 3 times a week, workout in the gym most days and compete in power lifting competitions. He had been a runner and squash player as a younger man. These pursuits ended 6 years ago when he contracted Sepsis (totally unrelated to PD) which ultimately put him in a wheelchair unable to stand or walk. He still undertakes daily upper body exercises with weights and is hopeful yet that a further orthopaedic operation will give him back the ability to stand, he will shortly be 81.
Exercise for him has never driven him to bed with exhaustion. I say this because by comparison having CFS myself I find exercise causes me to crash badly and sleep excessively, sometimes a whole day through. I have to pace myself constantly. Being my husband’s carer I try to avoid situations that put me out of action. I am fortunate that although I have some joint pain, which has been diagnosed as age related, I do not suffer with ongoing pains. Depression and lethargy are my companions and the constant need to sleep.
I understand your thinking that you may have PD from your descriptions especially as a neurologist has made that suggestion. I personally have a fear of being diagnosed with PD.
I also understand your thinking that PD as being treatable, is preferable to no treatment available for debilitating CFS. PD, on the other hand, is degenerative and not curable. CFS does feel like it’s a label GP’s like to give when they are unable to come up with an answer, it is little understood or researched and like PD is very individual in symptoms. There are some specific clinics and specialists available but few and far between. It is down to the individual to research these and seek referrals. However, some people do fully recover from CFS or have a revolving life of well/remission.
Meantime, my husband’s PD continues to decline he has bowel and bladder problems, his speech is slurred, I often cannot understand him. When people talk to him he is unable to focus/tune in instantly so often misses the first part of a conversation causing him comprehension difficulties along with slow cognitive difficulties to respond.
He also suffers considerable hallucinations, has some difficulties eating and swallowing. He has numerous drugs to alleviate various symptoms all bringing their own side effects, dyskinesia uncontrollable body jerks & movements are a new addition caused by too much madopar. He lives in fear of the latter stages of PD.
One thing I would say if you are subsequently diagnosed with Parkinson’s do your research and seek out a hospital/neurology team recognised as being a hospital/centre of excellence for the treatment of Parkinson’s Disease and ask your GP to refer you there for your care. It was by far the best thing we did following my husband’s diagnosis. Best Wishes Jane

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@MtheP ,

Difficulty distinguishing worsening ME/CFS from potential PD symptoms. Lack of specific medication for ME/CFS compared to PD treatment options. Conflicting advice on exercise for ME/CFS vs PD. Desire to understand how others with PD experience symptoms.

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I have a similar story to some responders here. In 2012 I was diagnosed with CFS/ME and granted ill health retirement. My main symptom was fatigue, poor concentration & memory but unknowing of the connection with Parkinson’s I had also lost my senses of smell & taste and started to sweat profusely at the slightest exercise. All of these were shrugged off my my GP and everyone found them mildly amusing.

In 2018/19 I developed a slight tremor in my left arm/hand. I saw a neurologist who shrugged it off as essential tremor and I began several years of trying various medications. Not surprisingly none of which had any effect.

Last year, 2023, I asked for a second opinion and had a Dat scan which, lo and behold, revealed early Parkinson’s. Throughout this whole episode I have maintained a good level of fitness, cycling up to 60 miles several times a week and walking about 4 miles a day. Very often I pay the price feeling washed out for a few days afterwards but my stubborn and competitive nature prevents me giving in whilst I can keep going.

My advice to anyone with CFS/ME is get a second opinion because Drs seem too easily to dismiss what I would think are important signs, looking at them in isolation rather than looking at them in conjunction with each other.

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It sounds challenging to differentiate between worsening ME/CFS and potential PD symptoms. ME/CFS lacks specific medications, unlike PD, which has treatment options. Exercise recommendations for ME/CFS and PD can also be contradictory. Hearing how others with PD experience their symptoms might help clarify and manage your condition better.

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I had post viral fatigue/CFS for a 5 years before Pd diagnosis. THere’s a huge overlap in symtpoms early on. A DAT scan might help and trial of madopar to see if symptoms improve.
my fatigue is a lot better (not gone)