Are these Fibro symptoms?
Kerrie - Oct 25th, 2009 10:42 AM
[ Original Post ]

I have been diagnosed with fibromyalgia and although I have had pain for years I used to be a gymnast so didn't think much about the pain. I am now struggling with various symptoms and woncered if others suffer from them to:

- Feeling spaced out - as if I am not here
- Breathless for no reason - struggle to have a conversation sometimes
- Pins and needles in arms
- Right sided numbness
- Doctor told me i have almost absent reflexes in my right handside but doesn't know why
- Pressure feeling in my head - not a headache but a pressure type feeling
- Facial numbness (always on the same side)
- Feeling constantly anxious when there is no reason to be
- A sudden feeling of muscles tightening

I would apprecaite knowing if any of you guys suffer from these symptoms and if they are fibromyalgia related.

Comment


 

Kerrie - Oct 25th, 2009 10:45 AM

Also palpitations


Fantod - Oct 25th, 2009 7:54 PM

Hi Kerrie - Welcome to the group. Most of the symptoms that you have described are not unusual for Fibromyalgia (FMS).

Take some time to read through the blue boxes on the lefthandside of this page. This is, in my opinion, the best website on FMS on the Internet.

People with FMS are shallow breathers. I am frequently breathless and have trouble with conversation. I either run out of air or become hoarse for no apparent reason.

Pins and needles and numbness can be part of the equation too. Part of it is due to nerve pain. You don't say anything in your post about medication that has been prescribed. Gabapentin is usually prescribed for nerve pain which canbe pins and needles, stabbing electrical or like a severe sunburn.

We call that spaced out feeling "fibro-fog." It is rampant among people with FMS. Not a nice feeling for those of us who used to have brains that functioned well. Personally, I put some of it down to the lack of restorative sleep that is yet another "perk" of FMS. Some days I'm only mildly out of it and others leave me thanking God for Velcro so I don't have to figure out how to tie my shoes. FMS disrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order repair themselves from the days activities. No restorative sleep means higher levels of pain.

I have to honest about one of your symptoms. The lack of reflexes on one side really bothers me. You don't say if you were diagnosed by a rheumotologist. I think I would get a second opinion from a neurologist for peace of mind. Get copies of any recent tests, bloodwork etc and see someone else. You can call your local hospital physician referral service and ask them for a recommendation.

I suffer from extreme anxiety too. Many people on this board have issues with it. I think it stems from not being able to control what is wrong with your body. I get riled up over nothing and it takes forever to talk myself down. I used to be fairly impervious to the daily bumps of life and now I'm a sniveling idiot with the slightest provocation. My days of eating nails for breakfast are long gone - lol.
Deep breathing is a simple trick that will often stop it before things really get out of hand.

And, muscle tightening is normal too. People with FMS have tight tendons and muscles most of the time. You may find that you experience twitching and cramping as well. You can get Malic Acid at any decent healthfood store. It is a magnesium compound that will help quite a bit with that symptoms. Make sure you understand how to take it and any risks associated with taking it.

I'd like to better understand what medications you may have been prescribed and what type of doctor made the diagnosis if you are willing to share that information. A rheumotologist is the best doctor to manage FMS. Take care.


Kerrie - Oct 26th, 2009 6:49 AM

Yep this website has been very good forfinding out various information.

My soaced out feeling feels differnt to how I have read fibrofog, its not hat I forget things etc I just feellike I am not here, does that make sense? I wonder if anyone else feels like this?

I have seen three rhuematologist one said I didnt have fibromyalgia and two said I most definitley do have. I see a neurologist for a brain scan as i was getting a lot of headaches they said there were minor changes of no relevance and that it was the fibromyalgia causing the headaches.

I see a respriatory doctor due to my lack of breathing and he did a full examination including reflexes and said some ofmy reflexes on the right hand side were non existant but that it was unexplainable and no further tests were to be done. I had previously had reflexses testedby the rhuematologist and neruologist who said they were fine.

The rheumatologist told me to take 10mg of amitryptiline and to be honest it just made me feel so more spaced out that I stopped taking it. I havent been given any further medication.

Today I had to have an xray on my stomach. I had to lay on the bed and then when i stood up i nearly passed out, went reallydizzy and had to sit backdown,is this another symptom? MyRhuematologist gaveme a small booklet on fibromyalgia when he diagnosed and halfthe symptoms that are on this site weren't listed in there so I feel a bit left on my own.

A lot ofmy symptoms I worry are amajorlife threatening disease rather than fibro,is it normalto think like this?

Thank you for any feedback


brooksidefarm - Oct 26th, 2009 10:41 AM

Have them all. Don't ignore a warning bell that something is not right, but I have these same symptoms and the md's have not found anything else.



gucci - Oct 26th, 2009 1:24 PM

Hi Kerrie, i can truly feel what your going through ive been having the same symptoms for months the facial numbness and the anxiety is my worst 2 at the mo its really bad some days and yes it is down to the fibro i had my doubts but ive had all the tests to rule any underline problems and they came back negative so the doctoe put it down to the fibro im currrently on amitriptyline 30mgs at night and ive been given cymbalta to try i start tonight with these i will let you know if they help, hope you get some help soon too take care


Kerrie - Oct 26th, 2009 2:23 PM

When do you start getting used to all these symptoms and not let it affect your day?

I am having real trouble trusting my diagnosis and think every symptom is something life threatening which is causing me so much anixety. I feel really guilty that I am affecting the quality of my husbands life and my 15 month old.


Kerrie - Oct 26th, 2009 2:25 PM

Gucci - Have you found anything that helps the facial numbness? I really cant stand that feeling.


gucci - Oct 26th, 2009 5:33 PM

Hi kerrie no i havent yet found anything that gets rid of the facial numbness and like you i think the worst and then i get anxiety attacks its a vicious circle ,and yes it puts you under great stress then to try and be normal for your hubby and kids, its hard i know what your going through.ive yet to find the cure on all the problems


Fantod - Oct 26th, 2009 7:08 PM

Kerrie - You need to see another rheumotologist to be properly treated for Fibromyalgia (FMS). A prescription for 10mg of Amitriptyline is not going to do it. This is a serious health problem which is not being properly addressed by your current doctor.

Fisrt of all, FMS is a disorder of the central nervous system that causes widespread chronic pain. The mechanism that causes FMS is not understood. There is no cure but it can be managed with prescribed medication. FMS is recognised by the Center for Disease Control and the National Arthitis Foundation.

There are now three main prescription medications being used to treat the type of pain caused by FMS. They are Cymbalta, Lyrica and Savella. Only certain classes of prescribed medications work. OTC remedies do not. I use Cymabalta which works well. Savella is new to the US market this year. It has been used in Europe for decades. Lyrica is advertised on TV all of the time. It would not be my first choice because of the rapid weight gain associated with this drug.

The reason your doctor gave you a prescription for Amitriptyline is to offset the sleep problems caused by FMS. FMS disrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the days activities. A lack of deep sleep causes higher levels of muscle pain. Not taking your prescription is creating more problems for yourself.

Find another doctor by doing one of two things.
Call the local hospital and ask the physician referral service for a rheumotologist and/or a pain specialist (I have both) with an interest in FMS. Or, you can go online to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly healthcare professionals in your area.

There are a lot of doctors out there that either do not beleive FMS exists, are too lazy to treat it properly or are not up to date with the current treatment regimen.

It does take time and alot of tinkering to find the right medications and dose to get some relief. It also takes time to get used to the side effects. Things will get better.

I hope that you will take my comments seriously. FMS places a lot of stress on the body. The longer a chronic pain cycle goes on, the harder it is to stop or manage. You should follow any directions about taking medication to the letter and not stop anything without discussing it with your physician first.

You are not alone. Take care and keep in touch.


Mrs Zozzer - Nov 1st, 2009 5:30 AM

I have had a very painful neck and shoulders for the past two weeks (Had it before but not this bad) the consultant would not admit it was firbromyalgia but "Just wear and tear" I also get left sided face numbness includeing left side of my tongue going to go back to docs and ask for a second opinion as at night I find it difficult to sleep and when I'm at work things I knew of the top of my head seem so hard to think of now. Some days I think I'm going MAD