Happy new year to everyone, I hope you have had a good Christmas and this new year brings you some sort of good health and happiness,
Well if anyone has been following me I have many unanswered questions, and waiting to be seen by new doctors who may be able to answer these for me. I have really been going though a bad time where my body pain is has been too much for me to deal with. In between with increased medication I was feeling alittle better, but once they have lowered my medication due to them wanting to see how my pains become I am here in this pain, where some days trying to pick up a glass of water makes water come to my eyes, The pain has now traveled down my arms and into my hand and fingers too. I have another hospital appointment next month and awaiting for PD appointment which she is trying to bring back forward again, to see if there is anything she can do to lower the pain. Still don’t know if it is PD I have or something else, but my nurse says as I have a positive take to the pd medication she knows that I do have it, but there must be something else too, which they need to find .
Hi Raz1 I know your pain could be down to many things but I have similar pain and suffer from fibromyalgia as well as pd and my mother has polymyalgia which gives her similar symptoms there is a blood test for the polymyalgia but not for the fibromyalgia maybe worth getting gp to do some tests hope this will help
Pete
Hi Pete thank you for responding, you know you are not the only one to say fibromyalgia, I have heard from many people who all have this and they have all said to me that my pains sound like fibromyalgia, I will try today to get a doctors appointment and may just talk to her, as again have not slept all night due to the pain, I have been taking medicine to help which only lasts around 1/2 maximum. I have been taken Pregabalin 50 mg x 2 tablets 4 times a day and around 3 times during the night too. I will let you know how I get on and hopefully get the answers I need. Thank you again
I hope you have a good new year
King regards
Raz
This is a update as I did say I would keep you updated, I went to the doctors again, this time I wanted to see me, I explained everything to her and talked about the different pains I was having. How strong the pains are and how long I was experiencing them for. So it looks like you where on the right tracks, as she said that it all sounds like fibromyalgia, so I have a blood test today, so thank you all, I will keep you posted.
Hi Raz1 thanks for the update hopefully you will get an answer quickly when I was diagnosed a lot of GPS didn’t understand the condition it took me 3yrs to get the answer sorry for the late reply but I have been busy sorting and putting Xmas decorations away take care and if I can help please do get back to me
Pete
That’s ok we have just finished putting away things too, I had my blood test today and waiting time for results know. Well you take care and speak soon
Raz
A up date on things with me, I went to see the doctors as members on this site have said a few names to things what I was feeling and say my pains felt like, well thank you to them all as when I went and spoke to a different doctor and told them on how my body was hurting and everything else they did some blood tests. Then after the results come back that I was ok in all the tests, the doctor said to me that I may have fibromyalgia but he was not 100% . So he referred me to be seen by a Rheumatologists
So in the time of me waiting to see seen, I have got some more meds to help With the pain. The appointment to see am if I PD is at the end out this month.,? But I tell you something since I have started them the pain has improved. Here is the name of the naproxen 250mg, omeprazole 20 , Also I have noticed the number of head pain has gone down a lot. But my only concern is that I have been reading revives of people taking this Naproxen and their are a lot of side effects, for long time us. So let’s see until I get seen by the doctor that question will have to wait, I want to thank everyone from the bottom of my heart-all with their support and advice and I don’t think I would have got to the bottom of this with out them. So thank you all Raz
Hi Raz1 thanks for update knew there was no definitive test for fibromyalgia but try to stay positive as not everyone gets side effects I tried quite a few meds before landing up on nortriptyline plus co-codamol good luck keep in touch
Pete
Yes I think you are right regards the amount of medication I am on, I am waiting to see my nurse soon and I will bring this up and see if they can see a way to reduce the amount I am having . You keep in touch too. Raz
Of course I, ll keep in touch taking mam to hospital appointment tomorrow pm can, t go into detail on here but she, s waited 7 months on urgent list only for it to be cancelled last week as we were leaving gp suspects something and have not told her in case it, s false alarm only about 14 mths since my father passed away so decided not to tell her all the truth take care catch u soon
Pete
I am so sorry to hear that you have had bad news, and it’s hard to keep something away from the ones we love, I hope everything goes well at the appointment and you get some right and good support, please let me know how you get in, the Hosptail don’t notice how by changing appointment effect the person and the stress it builds up, but anyway good luck for today
Raz1 I was curious is your pain on the same side as your PD effected side the worst. My pain is worst at night. The pain come in about three hours after turning in. The pain is most noticed in my right hand because that is stronger in intensity. My right leg has pain as well. Both limbs are stiff feeling.
What happens first is my hand numbs and tingles. There is no position I can move the arm to lessen the numbing. As time goes on it turns from numbness to all out pain that will spread to the shoulder. If I just try to fight it. Then the right leg will have spasms. The doctor prescribed a slow time release sinemet that used to help in the early stage of the disease.
But now all I can do is get up move the arm and stretch it. It takes probably an hour to get back to feeling alright. In that hour the opposite happens. First it is painful and proceeds to numbness, finally getting back to just stiffness.
Then I just stay awake till the time come to start my regiment of doses.
I think my pain is PD related. Dystonia type.
I have been reading the input of posts. Thanks to all for letting the Yankee from the other side of the globe read your incites.
Hi Raz1 thanks for the reply mam been discharged from renal clinic next up is gastro next week hope the meds work for you will be in touch soon I, m here for you anytime if you want anything
Pete 0
I am sorry to hear you are not getting any rest, i am just like you, the pain is in the legs and but mostly on my left side. I notice it starts around 9:00 at night where I can feel the leg starting to pull and the whole muscle starts to twitch inside but you can’t see this on the out side, than it other leg starts, it makes not difference, I try to walk around and to move around but no difference, I stay awake all night as the pain and the twitching and the feeling of numbness drive me mad, the left shoulder kills and the muscle tightness so much that i am sitting with hot water bottles on it for some sort of refil, than my arms where all muscles are to The top and so so tight too, I have been to see the doctors and know They are looking at another thing I may have too called fibromyalgia, this also effects all muscles in your bodie too, but you do need to keep going back and explaining to the nurse and doctors how you are feeling as it’s so important. I think everything you have side seems to describe the PD but you need to keep a eye on how bad the pain becomes more bad or anything changes. I wish you all the best and please let me know how you get on
So is that a good thing that your mum has been discharged from clinic? I mean where they able to help her? I hope the gasyro appointment goes well, take care and try and get some time for you too. I know sometimes it’s not possible but it’s import too. It is so hard looking after someone, all those appointments and clinics and everything else you do for them, but you need to look after your self too as your health is important too. I too am here if you need anything ,
All the best
Raz
Hi Raz1 yes discharge is good though mam, s kidney not functioning fully doctor says no change in last 4yrs I, ve made some special friends on forum and include yourself in the list
Pete
That is good news that there Has been no change in the last four years and the keeping and they will keep an eye on her kidney functions at a later date, I too have made some very good friends on here and you are in that too. Take care and speak soon. Enjoy your day .
Raz
Sorry for last reply, since I have started my know medication I am finding it so so hard to keep awake or make any Sense . My mind is saying and thinking something but I am typing something else. We’ll mornings are a lot better for me, so it’s nice that you are doing so much, but great to read you are getting some rest too. What fish dish do you have ?it is important to have a Bobbie when looking after someone so you get that break, I know cleaning a tank to someone may be a job, but to others it’s a time out. Any way you have a great weekend .
