So I was diagnosed three years ago with early onset Parkinson’s at 35 it had probably been going on through for few years I lost my sense of smell at 28 but put that down to pregnancy then my left fingers wouldn’t move, and I started getting pain in my left shoulder and my left arm would freeze so they thought it was a trapped nerve. Physio funky enough didn’t help and I gave up finally I started dragging my left leg and I was first of all told it might be ms m, so mri came back normal and the neurologist said I might have a basail ganglia disorder. So back we went and he then explained about Parkinson’s so I had the DAT scan and it came back with both sides showing a significant decrease in nuron activity so that was that! It took a while to get my head around this and the life changed we needed to make as a family. But then four weeks ago I started with this horrendous pain which moved into my chest and I was rushed into hospital. Finally the neurologist came and told me I also had fibromyalgia. I’ve just started on amatriptoline. So I’m just wondering if anybody has the same, I know some of what is my Parkinson’s and what’s fibromyalgia. But some of it gets a bit blurry. But any help hints and or tips of living with both gratefully revived
Welcome to the forum! Sorry to hear you had trouble with your diagnosis. I’m not sure if we have anyone with your situation on here at the moment, but I’m sure you’ll still find it useful and helpful all the same.
If you do have any questions or concerns, please remember that we’re also here for you and you can call our helpline free on 0808 800 0303.
Hi spibey like you I have pd and fibro myalgia but I had fm first and pd came around 4yrs later I know what causes what pain can be confusing you need to try and remember what pain is like and where you can feel it in time you will be able to tell some symptoms be careful you don’t overdo things because you will get tired quickly if I can help please do get back to me
Pete
Yeah I’ve got nerve pain in both legs take 75mg amitriptyline and 9 300mg gabapentine kills in cold weather also think gab gives you involuntary movement going to make appt this week as it’s really killing all the best
Thank you so much I felt like I was going crazy and the only one. I’m thinking of keeping a dairy to try and work out what’s what. But the fatigue is not fun but I just thought it was PD. I guess any pain that isn’t left side and extreme is FB it’s trying to understand both
