Stiffness, memory problems and complete exhaustion


#1
Hi all, I have no diagnosis as yet but in the last couple of months I have noticed a massive increase in stiffness.
It is in my legs, shoulders, neck and face. My face hurts and feels as if the muscles are pulled tight meaning I am having trouble relaxing it and altering my expression, I've noticed that on the odd occasion I actually find something hilarious and manage a full on laugh it's taking a while for my face to go back to "normal"
The stiffness in the upper parts of the body is causing sneezing to be very uncomfortable, I can't say painful because I don't think that's what I'm feeling.
My neck and shoulders are that stiff and ache that much that holding my head up is really tiresome. I can't drink from a long glass or bottle because my neck won't flex back far enough to do it. I've been drinking through a straw since November because of swallowing difficulties, so it's not really a massive problems, it's just every now and then I'd like to do something that at my age I should be able to do!

My memory is failing me to the point where I am leaving things in shops, I'm forgetting things I've been told a couple of days before sometimes even twenty mins before, things I've said and even embarrassingly this month I forgot I was going through the time of the month leading to a bit of a mess....
It is causing me problems in my personal life on top of all the other symptoms I'm experiencing.

I am having days where I am completely exhausted, I sleep well but have noticed recently I am waking up in a sweat and I don't know why.
This exhaustion is like nothing I have experienced before, I can't compare it to any other form of tiredness because it nothing like being tired.

I also seem to be having problems with temperature regulation. I don't know whether I am cold or not until I am shaking and freezing and my hands and feet have gone numb and white. The few days that were like spring we had last week I was sweating like a pig, my hands and feet were wet and I was feeling that hot I couldn't breath, opening doors etc led to be going from red hot to freezing cold in about 15 mins.

Is this sort of thing common in pd?
How do any of you cope or manage any of these issues?

#2
Hi Missiem,

sorry to hear about the difficulties you're experiencing am also sorry that I don't have any easy answer for you. What you describe sounds like a number of Parkinson's symptoms, but they also sound quite extreme. You say you have no diagnosis yet. Are you in the process of being assessed by a neurologist who specialises in movement disorder? You don't say if you're taking any medication, so I assume at least that you're not on any anti-Parkinson's medication. If the things you describe are Parkinson's related and you are put on anti-Parkinson's medication, I would expect you to find that most if not all of the symptoms you describe went away quite quickly and you would feel perfectly well for some time.

If you're not in the process of being assessed, I would suggest a visit to your GP quite urgently. If you are being assessed and have an appointment coming up soon (within a week or two) then bring these concerns up at that appointment. If your appointment is some time off, I would phone the neurologist's secretary explain the difficulties that you're having and ask for an urgent appointment. If you have a problem getting through or identifying who should speak to then I would again suggest a visit to your GP and explain these difficulties and ask them to arrange an urgent neurology appointment for you. If the symptoms turn out to be Parkinson's you can expect the medication to work well and that's how you'll be able to cope. Equally if they're anything else then you need somebody to be assessing that and treating you accordingly.

Please do take some action. You shouldn't have to feel the way you describe.

Best of luck

Radar

#3
Hi thank you for your reply.
No I am not on any medication.
I was seen by a neurologist in January and told it was all in my head! I returned to my gp numerous times as I strongly believe this isn't in my head, only to find out that the neurologist had recommended I be seen by a specialist in movement disorders. (The neurologist I am seeing is featured as one of the specialists in the q&a section of this site)
This appointment is mid April.
I have been in tears in my gp surgery begging for some help but I have got nothing, I can't eat properly and was living on sip feeds until I was told I couldn't be prescribed any more until I had been assessed by a speech and language therapist. This was in February, so I am surviving on baby portions of food eating around 4 times a week and drinking copious amounts of Apple juice and tic tacs to increase the saliva but as I can't swallow properly this is becoming a chore. Everything is a chore...
I have also have issues with blood pressure, bladder and bowel, speech, vision, taste and smell.

As you say this is all extreme and in the grand scheme of things has come on very quickly, from what I understand about pd these difficulties don't tend to arise until the later stages and this worries me.

I desperately hope I get some answers at this appointment as I can't carry on like this, I pray every day that I will get some form of medication to bring a bit of normality to my life again.

#4
hi again,

Your situation sounds truly dreadful. It is difficult to know what to suggest but I have two thoughts. First of all if you're not getting the support you need from your GP who obviously listens to you but doesn't seem to be intervening on your behalf then you can change GP without giving a reason.

It's good that you've been referred to a movement specialist, but if you feel that you can't wait until your April appointment, have you tried going through PALs, which stands for Patient Advisory Liaison Service. They are based in hospital and I as I understand it where appropriate they will intervene between patient and medical system or alternatively advise a patient how to negotiate the system. You can read about them online anyway and I'm sure they're worth a phone call to your local hospital if nothing else.

I'm sorry I can't suggest anything that might be more useful and I really do wish you well.

Final thought, you don't say what part of the country you're in but PUK have a regional support network and may well be able to offer you better advice than this. Their contact number is all over the front of this website.

Best wishes

Radar