ive mentioned on here that get neck pain and headaches but today was in agony sat up in bed neck bad felt something go like pulled a muscle nearly hit ceiling pain that bad i cried. does anyone else suffer from this took iburofen pain not gone yet be good to hear from anyone thanks im 51 shock wen told got parkinsons wont let it beat me im taking stavelo mirapexin anti sickness too at least its treatable
Hi kathy33,
Sorry to hear about the problems you're having with pain.
You can find our information sheet on pain in Parkinson's: http://www.parkinsons.org.uk/default.aspx?page=10515
It covers headaches and looks at the potential causes of severe pain in Parkinson's.
You can also call our helpline and ask to speak to a nurse. The number is 0808 800 0303.
Take care,
Ezinda
Sorry to hear about the problems you're having with pain.
You can find our information sheet on pain in Parkinson's: http://www.parkinsons.org.uk/default.aspx?page=10515
It covers headaches and looks at the potential causes of severe pain in Parkinson's.
You can also call our helpline and ask to speak to a nurse. The number is 0808 800 0303.
Take care,
Ezinda
Hi Kathy33 I can relate to the sort of pain that you describe. I pulled a small neck muscle last week and spent about four days in agony. I used an ibuprofen muscle rub on it and it finally cleared up. I also have a constant pain in my left arm and left groin, this too feels muscular, however no amount of muscle rub helps.Ive had it now for about 6 months and the pain is really bad. I asked if I could have a 'botox' injection when I saw my neuro last week but was told that as it's NOT for cosmetic reasons, I couldn't have one... unbelievable to say the least eh!!!!
Ive also just been told that my GP refuses to partake in the shared care with my specialist and wont fund the apomorphine pen that has been recommended by my neuro. So I must remain in constant pain...I am in the process of writing to my MP and the PTC have been informed. God help us all is all that I can say... they will legalize euthanasia next, because those of us with chronic conditions are costing society too much.
Glenchass
Ive also just been told that my GP refuses to partake in the shared care with my specialist and wont fund the apomorphine pen that has been recommended by my neuro. So I must remain in constant pain...I am in the process of writing to my MP and the PTC have been informed. God help us all is all that I can say... they will legalize euthanasia next, because those of us with chronic conditions are costing society too much.
Glenchass
hi Kathy33
I also get really bad neck pain. In addition to this i get pain in my upper back and shoulders. I find the more i lay down or just sit around, the worse the pain gets. Its a difficult balance, because staying active with a progressive illness gets harder and time goes by. On the other hand in my experience, the pain is much worse when your not active!
hi Glenchass, "your GP refuses to take part in any shared care with your Neuro?"
I assume you mean the "shared cost" of your care? That's crazy thing for your GP to say and in my opinion completely unacceptable! I was put on the APO-go pump almost 2 months ago and My Neuro only picked up the bill for the APO pump unit. My GP foots the ongoing cost of the APO treatment. I must admit however, i did have to "kick down" a few doors at my local medical surgery to achieve this. For example, my GP wanted me to use the cheapest needle and infusion line available from the NHS, and not the one recommended by the pump manufacturers. Lets just say after my GP had repaired his "kicked in" surgery door, not literary of course! He agreed that i could have the CORRECT needle and infusion line and not the CHEAPEST one! You have to make it VERY CLEAR to your GP, shared or not shared costs, it is his duty to provide you treatment recommended by your specialist.
Good luck
bluey
I also get really bad neck pain. In addition to this i get pain in my upper back and shoulders. I find the more i lay down or just sit around, the worse the pain gets. Its a difficult balance, because staying active with a progressive illness gets harder and time goes by. On the other hand in my experience, the pain is much worse when your not active!
hi Glenchass, "your GP refuses to take part in any shared care with your Neuro?"
I assume you mean the "shared cost" of your care? That's crazy thing for your GP to say and in my opinion completely unacceptable! I was put on the APO-go pump almost 2 months ago and My Neuro only picked up the bill for the APO pump unit. My GP foots the ongoing cost of the APO treatment. I must admit however, i did have to "kick down" a few doors at my local medical surgery to achieve this. For example, my GP wanted me to use the cheapest needle and infusion line available from the NHS, and not the one recommended by the pump manufacturers. Lets just say after my GP had repaired his "kicked in" surgery door, not literary of course! He agreed that i could have the CORRECT needle and infusion line and not the CHEAPEST one! You have to make it VERY CLEAR to your GP, shared or not shared costs, it is his duty to provide you treatment recommended by your specialist.
Good luck
bluey
Totally agree with you Bluey, one has to be a bit bolshie now a days to get ones point over and it really should not be like that..
How did your meeting go on Friday Bluey? I was thinking about you.
radz xx
How did your meeting go on Friday Bluey? I was thinking about you.
radz xx
Hi Radz, your quite right it shouldn't have to be like that! But alas, we are now living in times when your seen as a individual cost centre by the NHS and not as a individual patient?
Friday's meeting with PUK proved very constructive indeed, once i finally got there. According to the map PUK offices are only a 5 min walk from Victoria bus station? That's of course assuming you don't turn left when you should turn right? I knew things were not looking good, when after 40 mins of walking ( or should i say shuffling) i found myself about to cross the river Thames in to South London!
However i finally got to the offices albeit late. As i said the meeting went very well indeed and I'm just waiting for PUK to come back to me on a couple of points. Then all being well we will have lift off in a National Campaign to raise awareness of OCD's associated with taking DA's. Equally its about promoting the benefits of taking DA's, when taken in a well managed and risk evaluated environment and overseen by an informed medical professional. I speak not only as someone who lived the worst aspects of OCD side effects but also as someone who started on DA's then moved to levadopa then back to DA's via apo-morphine. I honestly believe when managed correctly there is vital role for DA's to play in treating PD. However as things stand today, the medical profession and drug companies are in many instances not managing the risks vs rewards correctly.
Hopefully i will be able to give you and everyone else a full update on what's going to happen via the forum and PUK website within a few days.
regards
bluey
Friday's meeting with PUK proved very constructive indeed, once i finally got there. According to the map PUK offices are only a 5 min walk from Victoria bus station? That's of course assuming you don't turn left when you should turn right? I knew things were not looking good, when after 40 mins of walking ( or should i say shuffling) i found myself about to cross the river Thames in to South London!
However i finally got to the offices albeit late. As i said the meeting went very well indeed and I'm just waiting for PUK to come back to me on a couple of points. Then all being well we will have lift off in a National Campaign to raise awareness of OCD's associated with taking DA's. Equally its about promoting the benefits of taking DA's, when taken in a well managed and risk evaluated environment and overseen by an informed medical professional. I speak not only as someone who lived the worst aspects of OCD side effects but also as someone who started on DA's then moved to levadopa then back to DA's via apo-morphine. I honestly believe when managed correctly there is vital role for DA's to play in treating PD. However as things stand today, the medical profession and drug companies are in many instances not managing the risks vs rewards correctly.
Hopefully i will be able to give you and everyone else a full update on what's going to happen via the forum and PUK website within a few days.
regards
bluey
thank you blue eyes for a sensible update
dear Kathy33 perhaps you could try CO=codamol for pain (I get this too, on one side of my neck) I believe it is stronger than Ibruprofen. You can buy the weakest strength OTC, or your GP can prescribe the stronger ones. Co-codamol is also supposed to be kinder to the liver, which is something pwp taking meds are supposed to be aware of & monitored for
Take care, my best wishes to you
Take care, my best wishes to you
Hi , I also get severe neck pain and feel as head will explode with pressure and feel head is to heavy for neck . Relaxing is a no no as I cant , keeping on the go Im better . The only release I get is yoga , not the classes but special exercise for neck pain .My posture is forward due to pd so neck is getting all the strain and when I get locked in spasm I can work it through gradually with exercises ,I know this isnt the answer for everybody but its of some help to me ,my back is curving slowly too but Im not going to let it beat me yet !!!! I do take pain killers but I feel an inner fight with my muscles pd going against me and yoga exercise fighting my muscles to stretch the right way , when I do my exercises the feeling of lightheadness and floaty relax feel great . I know this isnt the answer but it helps pain and exercises are simple not complicated .I do realise that it wouldnt suit everyone but it is a relief and doctors do not realise the benefit of this sort of pain relief , although my pd doctor did suggest yoga for me to relax . Hope this is of some help to you but I do understand that the pain is too much and trying to do exercise is not for every
person with this problem .
Hope you feel better soon and hope you get some relief , Ponco x
person with this problem .
Hope you feel better soon and hope you get some relief , Ponco x
Hi kathy33 sorry to here your suffering so much
I also get really bad headache and neck pain
My doc thinks it's migrane but I'm not convinced
I agree with ponco and finds exercise helps
But I knows it not for everyone
I do a hr of pilates and some swimming
This helps with the neck pain
All the best adrian
I also get really bad headache and neck pain
My doc thinks it's migrane but I'm not convinced
I agree with ponco and finds exercise helps
But I knows it not for everyone
I do a hr of pilates and some swimming
This helps with the neck pain
All the best adrian