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Think I have Fibromyalgia and need help! :(

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Posted 3/19/2010 3:33 PM (GMT 0)
Hello. I'm new to this site because I am searching for someone to give me some advice. My doctors are still in the process of trying to figure out what is wrong with me, but I have had symptoms for over a year and feel like no one is listening to me and everyone thinks its all in my head... I am 24 and female by the way, living in the UK

 

Okay so about a year ago I started to have tingling and muscle twitches all over my body. Mostly in my left foot to begin with but then they started to appear everywhere, with chest and head pain also. The doctors kept diagnosing anxiety and sent me away feeling stupid and without help. This continued for a long time and I was eventually sent to a neurologist who ordered an MRI of brain and spine, which came back clear. He didnt want to follow this up, and said the twitching was due to stress and i should see my GP for ways of helping it.

 

 

I have since started to experience pain all over my body. It feels like burning sensations all over. My chest is extremely sore. The muscle twitching has progressed to muscle spasms, where I can actually see my muscles move all of the time. I have went to the ER (accident and emergency) a few times as I thought I was having a heart attack or seizure, and have come out with clear X-rays and clear blood tests. I really dont know what is happening to my body, its causing me so much distress as I am off sick from work a lot, and find it hard to enjoy anything in life anymore. My doctor suggests anxiety could be the reason, but I really think it is Fibromyalgia as I have the chest pain, muscle spasms, pain all over and I'm very tired all the time. My fiancé has been really supportive but sometimes I think he feels that I'm overreacting and should just get over it

 

I just wondered what everyone else thinks.. Could it just be anxiety or does it sound like Fibro? What do you think I should do? Some support would really help me get through this..

 

Thanks

Posted 3/19/2010 3:57 PM (GMT 0)
We can't really diagnose what is going on, not being doctors and all... but it would help if you could tell us what anti-anxiety meds you are on... Or whether or not the doc gave you any. Your chest symptoms could be costochondritis but since this started in your foot... it's kind of murky. What has your doctor specifically done to help you?
Posted 3/19/2010 4:08 PM (GMT 0)
Thanks for your reply...

I am not on any anti-anxiety meds at the moment... thats why I'm getting so frustrated with my doctors as this has been going on for over a year now. I am seeing him again on monday afternoon. I have never heard of costochondritis.. does this cause twitching also? So far.. my doctor has sent me for MRI, checked for diabetes, angina, thyroid problems. i think he is trying to rule out everything physical first but I know that there is no test for Fibro and I havent suggested to him that I think this may be what I have. I'm just a mess at the moment...
Posted 3/19/2010 4:16 PM (GMT 0)
There actually is a test for fibro and your doc should know it. They press on certain points along your muscle/nerve paths and check your reaction. If he/she hasn't prescribed anything just yet it is probably to prevent masking your symptoms until a definitive diagnosis can be made.

I hate asking this but has your doctor ruled out Parkinsons?
Posted 3/19/2010 4:34 PM (GMT 0)
Parkinsons has never been discussed with me, i was just told i had a completely normal MRI. I will mention Fibro when I see my doctor on monday and try to get referred back to Neurology so all possibilities can be covered. It's horrible being stuck in limbo like this...
Posted 3/19/2010 4:49 PM (GMT 0)
Hi there! and welcome to a great forum full of really kind and supportive people. You've come to the right place. I'm sorry you are having such a rough time, with pain, and less than understanding docs. I don't know what to call you, and I don't want to call you "twit" :) so I'll just call you Joe. ha! What you are going through right now seems horrid and it is- but the good news is that now you have a name and a possible answer. Your story is my story, so many of us share your experiences. There are a few things that you can do while waiting for a diagnosis. The first thing is to tell yourself that you are not crazy, its not all in your head, you are not imagining things. Give yourself a pat on the back for being able to think through all the ickiness and put it all together. Information and knowledge are your best weapons. Read all you can; make a list of specific issues for your next doc visit. In the meantime, try these simple things: drink lots of water; take vitamin D, a B supplement and omega 3 fish oils. You will get amazing advice and encouragement here from lots of people with years of experiences. Finally what I want to say to you is that your health is in your hands. SO- be positive. Turn off the radio when sad songs come on. When you hear yourself thinking that you can't handle it, you're not good enough, turn off THAT radio, too! You can be healthy- just look at the word- "heal" and "thy". Take your attitude, your future, your well being, and your right now- take it all in your hands, and live, don't just endure. Let us know how you are doing, Ms. Joe!
Posted 3/19/2010 5:45 PM (GMT 0)
Hi Twitcher and welcome. Read the fibro 101 thread, second on the first page, it contains lots of great info including a list of fibro symptoms. Many will print the list out and check the ones that apply to them and take it to the doc with them. There is also a list of other things that have a lot of the same symptoms as fibro that needs to be ruled out with test before a fibro dx can be given. Also you can keep a journal of your pain to take to the doc with you even though you don't have a lot of time before Mon to do so but every bit of info you can take will help and bring up the tender point test.

 

Fibro doesn't present the same way with everyone. For me it was anxiety and fatigue first and we had tested for a long time before I finally had my first, been beaten with a baseball bat, flare that made everything click into place for my doc. When he did the tender point test I kept grabbing his hand cause I had no idea what he was doing but boy did it hurt. I was clueless about fibro at the time. My GP dxd me and then sent me to rheumy for confirmation.

 

Moist heat in any form is our friend showers, baths, heating pad and Bed Buddys you put in the microwave to warm and they give off moist heat. You can also make your own by taking a man's long tube sock and filling it up with uncooked rice and tying the end shut and put it in the microwave a few minutes.

 

Stress is an enemy and just fretting over what is wrong with you can be enough stress to make you hurt. I know it's not easy not to stress but do try to distract yourself when you are stressing and do something fun to take your mind off of things. We also have to keep moving and pace ourselves. I can't sit for long periods of time or I will start hurting and I can't be up doing housework for long periods of time without hurting so you have to keep a happy medium.

 

Good luck and we are here for you.

 

luv and hugs

Marlee

Posted 3/19/2010 6:03 PM (GMT 0)
Find a Naturopathic Doctor who knows FM: there are 18 body spots specific to diagnose Fibromyalgia. It's a real waste for a doctor to order other tests: there is no TEST for FM. You need the right doctor!With proper treatment twice a month for 18 months and dietary plus lifestyle changes and proper exercise you can control your FM pain.
Posted 3/19/2010 9:43 PM (GMT 0)
Hello, I am new too. Found this site by mistake but glad I did. I had every test done also. I tested pos. for lyme, but PMC Dr. wrote it off. Do you have the brain fog? I had gotten the fog really bad. I prayed alot. Then by chance saw a news paper ( I never bought the paper ) just picked one up that day and read about a Dr. treating lyme when others would not. I made an appt. next day. I was on strong antibotics for 6 mo. brfore my head cleared up. My PC Dr. was ready to give up & send me to a srink ( can't spell very well sorry ). He did one more round of blood test and my RH was too high, so he sent me to a Rheumatolgist, and she finally did the pressure point test and I at last had a name for my pain. Two years later. I am still searching for answers, but the pain is under control for now. Do you know the weather is changing BEFORE the news? I have a clearer head but still forget names I have known all my life. There are web sites, great books at the library. I still hope to go back to work so NEVER give up! My husband is a total jerk. A good support team is very important. I hope you have one with your home family. If not the fibro family is priceless. I hope to talk to you more. Don't know if I can give you my e-mail, but would love to help you too. I am if you want to talk.
Pam from NC

Hi, Pam!  I took out your email address from your post.  Anybody, throughout the world can see that and it could spell problems for you.  If you would like, put your email address in your profile and then only HealingWell members can read it.  That is far safer!

 

I'm also copying and pasting this post to start a new post so the members will know you are here.  Again, welcome!

 

Sherrine

Post Edited By Moderator (Sherrine) : 3/19/2010 3:57:04 PM (GMT-6)

Posted 3/19/2010 9:53 PM (GMT 0)
Hi, Twitcher, and welcome!  There is a test for fibro like Jeannie said.  It's called the tender point test.  This helps with the diagnosis.  Also, you are not wasting your time, as some have alluded to, in having these other tests done.  You see, many of the symptoms of fibro are also the symptoms of other illnesses, too.  These illnesses can and should be treated so that's what your doctor is trying to rule out right now.  We all have gone through this.  In Fibro 101, there is a link called "What Else Could It Be" and  you will see what they are trying to rule out.

 

There are many doctors out there that don't understand fibro...but they don't understand other things either.  Jeannie always says, 50% of the doctors are in the lower half of their class and yours could be one of them!  But there are many more who do work with fibro patients.  After all, fibromyalgia is recognized by the American Rheumatology Association as well as the National Institute of Health and other organizations.  It is a true illness.  If your doctor doesn't think so, or says it's all in your head, you need to change doctors.  You will not get help from them.

 

In Fibro 101 there is a link to a journal.  You can print this out and keep a record of how you are feeling when  you do things.  There are also links to pain charts that will help your doctor understand what you are feeling.  One has faces and that does help a lot.  Then, take this journal in to your doctor.  This will help them understand better what is happening to you.

 

I'm so happy you are here and have joined our fibro family.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.

 

Sherrine

Posted 3/20/2010 1:46 AM (GMT 0)
My daughter is a physical therapist assistant (PTA) and she advises that you see a physiatrist. Physiatry is a branch of medicine which aims to enhance and restore functional ability and quality of life to those with physical impairments or problems. These doctors tend to look at the body as a whole and specialize in physical medicine and rehabilitation (PM&R) which makes them specialists in muscular problems.

Free advice so take it for what it's worth.
Posted 3/20/2010 3:08 AM (GMT 0)
Thanks to everyone who took the time to reply. It's so great knowing that there's people out there who I can speak to about this. I have looked at the Fibro 101 post and it's really helpful. I have always been really scared to suggest what i think is going on with me to a doctor, as I had a bad experience with this before when a doctor got mad at me for using the internet as research for my problems. As if i'm not gonna look into the reasons behind my symptoms - after all it's been a year with no answers for me! Your support on here has shown me that it's up to me to take control of my health!

It's 3am right now and I can't sleep because muscles in my shoulder and foot are going crazy, and i've got the sore burny feelings all over (which I think are the 'tender points'. My chest hurts and my ears are buzzing, It really sucks. I was also wondering - do any of you with Fibro experience sinus infections? I dont know if this is a symptom, but i seem to keep getting them.

I hope all of you are feeling well

My name is Lyndsay by the way :)
Posted 3/20/2010 10:39 AM (GMT 0)
I would aslo ask to be tested for lyme disease. Lyme disease can cause the internal vibrations, twitching.

just rule it out.


melissa
Posted 3/20/2010 11:50 AM (GMT 0)
I've never noticed a bite or rash, and I dont think theres much Lyme disease in the UK, but i will mention it. It's better to get it ruled out

Thanks :)
Posted 3/22/2010 2:56 PM (GMT 0)
Fibromyalgia makes you feel tired and causes muscle pain and "tender points." Tender points are places on the neck, shoulders, back, hips, arms or legs that hurt when touched. People with fibromyalgia may have other symptoms, such as trouble sleeping, morning stiffness, headaches, and problems with thinking and memory, sometimes called "fibro fog."
No one knows what causes fibromyalgia. Anyone can get it, but it is most common in middle-aged women. People with rheumatoid arthritis and other autoimmune diseases are particularly likely to develop fibromyalgia. There is no cure for fibromyalgia, but medicines can help you manage your symptoms. Getting enough sleep and exercising may also help.

for more information Please visit http://www.healncure.com/services/201/primary-care/fibromyalgia
Posted 3/22/2010 6:17 PM (GMT 0)
Well I have just been to see the doctor and he has prescribed an anti-anxiety pill called sertraline. I hope it helps. he is also referring me back to the neurologist so will have to wait and see if i can get a diagnosis on this! How is everyone doing?
Posted 3/22/2010 9:10 PM (GMT 0)
good luck. i think the med you are on is zoloft.

Did I mention that magnesium really helps my twitching??

hope it can help you too

melissa.
Posted 3/23/2010 8:57 AM (GMT 0)
Yeah i take magnesium supplements every day which helps a bit. Is there anything else I could take for the twitching? I also have potassium
Posted 3/30/2010 9:36 AM (GMT 0)
Hey everyone

I'm still taking my zoloft (sertraline) and its causing jerking of my muscles which is really annoying considering I was put on it for my muscle spasms and twitching and muscle pain. Has anyone else experienced muscle jerks whilst on ssri's.. a google searched showed me that it is a side effect of this med. Just hoping it goes away soon as I got NO sleep last night at all and im exhausted...

Lyndsay

Posted 3/30/2010 11:44 AM (GMT 0)
Hi Twitcher, Sounds like you are really frustrated. Some of your twitching could be do
to anxiety and stress. It can be very stressful to be in pain and not know what is causing
it. So many of us have had to wait so long for a diagnosis. There are things that need to
be ruled out and unfortunately it all takes time. The longer it takes the more frustrated
you can get. I do understand because I've been through it. I take a SNRI,Savella and it
took awhile before I had noticed it was helping me. Hoping the Zoloft works for you.

In the meantime do what you can do to alleviate your stress. I have found that exercise
is one of the best defenses against stress. When I walk I can feel the tension released.
During the day I take time for myself to do deep breathing exercises and meditation.

Take Care Twitcher and please try not to worry. Hoping everything works out for you.

Hugs, Robin
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