Fibormyalgia or Parkinson's?

[Precious44]

I was dx with Fibormyalgia 8 years before I was dx with Parkinson's, my neurologist has said that was more than likely the first systems of the Parkinson's. Have any of you had this missdx.? The pain I felt all over my body was so intense, and the depression that I had I had to be put on disabablity. My Parkinson's dx was 4 years ago, so that means I have had systems of PD for 12 years not the 4 I though when my tremors started. Also I can just be sitting here at the computer and I will feel like an earthquake has just happen..is that part of the balance thing? I also will be sitting at the computer or in my room and feel like there is someone behind me, I am constantly turning around to see who is there and there is no one there. I feel sometimes like I am going crazy.

[etterus]

Please don't feel like you are going crazy... it can't help.

We all present differently. Many of us have had significant neuro degradation of multiple functions before we are accurately diagnosed. This can be motor and nonmotor degradation such as psychological, autonomic, or sensory symptoms... pain. It makes the diagnostic process as much of an art as it is a science.

The best we can do is seek skilled movement disorder specialist that work in tandem with other specialist who listen carefully to us... they can't help if they disregard or belittle our situations. Maintaining the best positive attitude as possible - as many of the contributors to this blog demonstrate - is very helpful.

[fishinggirl]

I have both diagnosis on my health record and didn't know it until I asked for the notes of my last visit. Doesn't change anything, just interesting my PCP didn't tell me this before she left for a new job? New doctor comes on board in a month, hope I like her. My Movement Specialist has changed his practice so I can no longer be a patient so I had to find a new one. Since Maine only has 2, I have to wait 2 months for an appointment with the new doctor. But I'm doing alright now that I'm over a UTI. Have a great day everyone!

[Hikoi]

Hi Precious 44

I found that alot of symptoms I attributed to other thngs over 10 plus years were actually early signs of Parkinsons. When I was diagnosed I was finally able to make sense of all these different symptoms. As fibromyalgia is muscle pain (plus other Parkinson type symptoms) it is very likely it could be an early sign I would think but not one I had. Depression is a very common early sign too.

Precious you mention feeling a presence in the room sometimes. You are not going crazy. This can be a symptom of Parkinsons but is also caused by some of our medications so would be worth telling your doctor about it.,

[Annie81963]

I am so glad I found this site,I have learned so much in the short time I've been on.It is a relief to know that I am not alone,have so much in common and that I AM NOT going crazy.

Thank you everyone for sharing!

[Lindylanka]

Hi Precious, I had a fibromyalgia diagnosis for some years before the PD diagnosis, which they still keep on changing their mind about. The drugs for fibro did not help me at all, and the stiffness and pain was really getting to me. I was put on Sinemet nine years ago, and it really made a difference, and most of the pain went. I did very well for a few years, then needed to increase my dose, so Comtess (entacapaone) was added. It is nine years since the PD diagnosis and I feel as though I am back where I started, pain and stiffness and slowness are really breaking through again now. It bought me time to bring up my youngest though, and I am not grumbling (or at least not too much). The startle reflex is often said to be heightened in PD, and maybe that is why you are feeling the things you do. And yes I relate to the 'earthquake' feelings. Normality doesn't always go with PD, so don't worry too much, as my mum used to say, what is normal anyway! I have learned you become your own expert with this disease, you know what is happening to you better than anyone. WE are all different. Oh, but I have met quite a few people over the years on forums and in chatrooms who also started with a diagnosis of Fibromyalgia, which is a real and quite difficult condition to have, but also a convenient label if the doctors do not know what is wrong with you, and all the usual tests come back negative. I was very grateful when sinemet worked for me, no painkillers or muscle relaxants did anything for me at all, it was the first thing that helped.

Hope this helps

[Marche]

I was dx with Fibromyalgia in '93 and my pain started in '89 ! So I'm sure you know the endless test, specialist, hospitals and back then a few "It's all in your head"...Well.. Look at me now ! Yes, it does seem IT IS my BRAIN ! Four years ago I was told I has Lupus. And I took that in stride and carried on. Many meds that NeVer worked ! It wasn't until after three weeks after a car crash that I awoke one morning unable to move at all. From hospital to nursing home I went with no real explanation until I saw neurologist outside of hosptal months later and was sent to another neurologist aat UVA in Va. who looked at mri and history,gave me a prescription and a timeline when to take them and come back in 2 months...I was they're for dystonia, my left arm and hand useless. I not sure really if we talked about PD that visit or not. but I remember looking at the prescription of Carbidopa/Levodopa (sinemet) and the refills are what hit me...Let's just say I'm never running out

The next visit came and as I'm talking to the Dr. about my arm and hand even my fingers uncurling and what a relief " Yea" !!! I say to him holding the bottle of meds "So I guess you knew just looking at me ugh"? Young Early Onset...It could have started back then. I'm glad to have something that works for me NOW ! A lot has happened in my 23 yrs.(it's taking me 2 days to write this lol !) Have y'all seen that new upright 3 wheel bike walker by Max ? God I WANT THAT BAD !!!

Thanks for letting me share, Marche'

[waggle]

Hi Precious I too was diagnosed with Fibromyalgia 14 years ago and although the treatment helped over time I started to develop other symptoms in my left side, particularly my left hand which affected my typing. My GP referred me to hand and wrist specialist who passed me over to OT who passed me back to hand and wrist specialist who in turn passed me back to GP with the instruction to ask to see a Neuro Specialist. GP referred me to Neuro who referred me to another Neuro as he thought I had a nerve problem in my left elbow and needed botox injections for it. At the appointment with the second Neuro he asked lots of questions about things I hadn't really realised were happening until he asked the questions i.e. turning over in bed, putting a coat on and numerous others, he then had me walk up and down the corridor after which he sat me down and told me that I didn't need botox as I had Parkinsons, this was 4 years ago so quite when in the last 14 years PD actually started I am not sure as it has been confirmed by both GP and Neuro that I do in fact have both PD and Fibro so have one lot of tablets for one and another set for the other. Sometimes its difficult to distinguish which symptoms belong to which diagnosis as some of the symptoms relate to both so getting the balance of meds right isn't always easy. I can totally relate to you with feeling like there's someone behind you and also the earthquake thing and balance problems. I can honestly say though that I was relieved when I was eventually informed about the PD and Fibro by the Neurologist as up until that time I thought I was a hypochondriac and was going mad, at last I knew why I was feeling as I did and the reason for the many varying symptoms that I was experiencing and at last other people i.e. friends, family and work colleagues understood, some of whom later said they felt really bad as at work I was nicknamed "Shuffler" because I couldn't pick my feet up when walking. You're not going crazy Precious we can all relate to how you feel but despite it all and all the rough times life is still good and there's still lots to look forward to although we may now have to do some things a little differently.

[shall1019]

I share the two preceding stories although in my case it was Chronic Fatigue Syndrome. There is no medication and so little help for it. Being diagnosed with PD was a relief - now every one knows what's up with me.