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speech being affected from fmd
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lken641 posted:
Is there anyone else with FMS that their speech has been severely affected, just got out of the hospital as they thought I had a stroke due to my speech change, it is hard for me to talk and the sound of my voice now sounds southern and I live in RI, I now slur my words, my throat feels tight and the pain in my face is really bad. I have a hard time in the pronounciation of words. I sound like I did have a stroke. Does anyone else have this syptom and does anyone know why this is happening? I had the same speech problem when I had severe symptoms in 2001 but at that time the doctors had no idea on what was happening to me. While in the hospital the doctor ordered a brain mri of my brain and the nerve endings, catscan of brain, ultrasound of arteries in my neck, had me see a psychiatrist, I was on a heart monitor and had an eceagram of my heart and received hepron shots in my stomack which is a blood thinner. Every time I have an extreme fms symptoms, i eat but loose a lot of weight and in the hospital I weighed 93 lbs. I normally weigh 115 pounds as I am 5'1 last bad episode I went down to 85 lbs. The doctor also increased my pain medication to try to get my pain under better control until I see my pcp and can start cymbalta and soma as I was diagnosed on 9/27-11 after a very long 20 yrs of suffering with this and having no answers After 2 days of tests the doctor told me that my speech is another symptom of FMS and I need speech therapy. I would greatly appreciate everyone's input and to receive all the information I could possibly get on this subject.
Thank you so much,
Laurie
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CrazyTaurensWife responded:
Hi Laurie,

I have speech problems, but usually only on my incredibly bad days. It's hard to form words, next to impossible to put even 3 word sentences together, and I can't understand what people are saying. It happened several times last winter and once (2 days) so far this fall. As long as I can keep my pain level in check, I do pretty well. I have noticed that I don't pronounce some things quite the same way. I'm from Kansas originally, but I've been in BC (Canada) for a little over 3 years now.

I'm on an anti-inflammatory, amitriptylline (elavil) for nighttime nerve pain, and I have now been prescribed tylenol 3s for my bad pain days. I hope your new meds and the speech therapy works well for you None of the meds usually prescribed for FM (cymbalta, savella, lyrica, etc) are covered by my prescription plan, so I can't make suggestions from personal experience.

~Jessi
 
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Isadorabelle responded:
I tend to have speech and throat problems as well. Often times I cannot think of words, forget how to prenounce them, or sometimes they just don't want to come out. Sometimes it is a severe stutter or the words come out in an unintelligible jumble. I find that it is like this most of the time, but most of the time I'm very aware of my FM symptoms.

I also have trouble swallowing most foods and a lot of drinks. It feels like they get clogged in my throat, as if my throat muscles aren't strong enough to push food down.

My aunt, also an FM sufferer, will often times slur her speech as well or be unable to communicate verbally. It seems like most of the FM patients I've spoken with have similar complaints. I hope you feel better!
 
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An_241298 responded:
Maybe I have not lost my mind. I thought I was getting dementia. The word/words are in my mind but I can't say them. I find myself describing what I'm trying to say if it's an object. I do find I can write it down but you can barely read my printing. This happens most often when I'm really in pain, haven't slept well and I'm very tired. I also feel like there is something stuck in my throat and have a hard time swallowing meat and bread. it often gets stuck and I have to grab a liquid and push it down. Scary moments.

I just don't think the researchers know enough. I would be part of a research program but they all wanna test drugs were I think they should be gathering SYMPTOMS.

Share a smile Anyone agree with that?
 
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An_241298 replied to An_241298's response:
I meant agree with research of symptoms not a smile. I'm tired with the time change
 
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lken641 replied to Isadorabelle's response:
Thank you for sharing, I too had the symptoms of everything you have said happens with your speech. Since 2001, I felt like there was a lump in my throat and could not swallow food, I also started to gag on my food and had chest pains so I called the rescue because I did not know what was wrong and thought it was symptoms of a heart attack, it was not and the doctors at that time did not know what was happening. I find it interesting and agree that the throat muscles are not strong enough. My pain level is through the roof right now and not under control yet and I am very tired. Hope you feel better too.
 
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lken641 replied to An_241298's response:
It is very scary and I had all that happen too, had the same lump in throat had a hard time swallowing and choked on my food but liquid would not wash it down and I was rushed to the hospital in 2001 but they did not know why that was happening, thought I was having a heart attack. I am in a lot of pain and very tired as the pain is just wearing me out. I find typing on the computer to be easier but know I have noticed that the word, words or sentences in my mind are not coming out right and notice this in my typing now. It takes a lot of concentration to make sure it sounds right and I need to proof read everything and change the parts that did not come out right, my speech gets very slow and sometimes I cannot talk at all. I called my FM specialist and she said that my speech was not a FM symptom, but the doctor at the hospital assured me that it was.

Yes, there is still a lot they do not know about FM, but at least the medical community is starting to know a little bit more because when I first got sick they knew nothing at all and told me it was all in my head.

I really appreciate your sharing as it is very scary to not know what is happening and also gives me some comfort to know that I am not the only one that this happens to. I thought that I had lost my mind to.
 
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lken641 replied to CrazyTaurensWife's response:
Jessi, thank you for sharing as it gets scary. I am starting to get very tired so I will keep this brief, I hope speech therapy helps and will let everyone know if it does or does not. I will be starting Cybalta tomorrow as I need to get preauthorization from the insurance company first. I am sorry your medical does not cover these prescriptions for you, but does the meds your on know help you? I am having really bad pain and am exhausted.
Laurie
 
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TomJust responded:
Thank you, Laurie for posting the question about speech problems. I have many of the same that other people here have mentioned; hoarseness, stuttering, inability to form words, let alone think of the words(!). I often have flu-like sore throat and swollen glands. I have had the lump in the throat sensation and difficult swallowing sticky foods such as rice or pasta. All this makes me feel a little less crazy/alone. Tom
 
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Wolfsong452 replied to Isadorabelle's response:
I also have the swallowing thing, with food and drinks like it's hard for my throat muscles to puch it down. I always thought it was due to me not drinking enough water.

I also have the thing, where my mouth gets tired of chewing.

Now that could due ;to having several teeth pulled, most of them being molalrs.

guess I need to write these down, to ask the PCP or my pain management doctor when I see them.
 
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Wolfsong452 replied to An_241298's response:
I totally agree, you hit the nail on the head, You could be talking about me.

 
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CrazyTaurensWife replied to lken641's response:
Hi Laurie,

The amitriptylline (elavil) is the only thing that lets me sleep at night. I really don't like taking meds, but I've found if I try to skip this one or even take a smaller dose, the pain keeps me awake most of the night. I have 16 of the 18 trigger points the doctors use to check for FM, plus another 18. Several of my most sensitive trigger points are along the outer sides of my legs. I still wake up and have to reposition myself at least 2 or 3 times a night, but I'm usually able to get back to sleep.

I have a bottle of tylenol 1 (can be bought without a prescription in Canada) and a prescription for tylenol 3. The prescription says to take 2 every 4-6 hours as needed, but I've been trying to take one tylenol 3 by itself or with one tylenol 1, and only on my really bad days. They help with the overall body achiness, but I haven't found anything that helps with my skin hurting. It doesn't burn, like other people describe...it's more like I'm just one big bruise.

I hope you find something soon that works for you. If I didn't have these meds, I wouldn't be able to function at all.

~Jessi
 
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lken641 replied to TomJust's response:
Thank you Tom for sharing and I think it is important to let our FM doctors know of these symptoms as there is still a lot to learn about FMD. I felt the same way that I was all alone and we are not alone but suffering the same symptoms. I am getting the lump back in my throat and in 2001 I had a lot of trouble to be able to just swallow. I feel that whatever part of the brain controls my speech is not working right and my throat gets very tight so maybe it is the muscles in the throat in combination with the brain. I do believe that if the doctors and researchers are aware of the symptoms that maybe they will be able to explain why this is happening and maybe someday be able to help these symptoms...for right now it is just good to know you are not alone.
Laurie
 
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lken641 replied to Wolfsong452's response:
Thank you for sharing as it is so important to know we are not alone and it is more FM symptoms. I am not so afraid anymore. We need to inform our doctors and inform one another if any treatments work.
Laurie
 
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lken641 replied to TomJust's response:
Thank you Tom for sharing, I am glad that I posted the question because I was scared and not that I wish this on anyone but it is good to know that I am not alone. I am letting everyone know that when my speech was badly affected in 2001, I was receiving treatment from my chiropractor for neck and back pain and one day he cracked my neck, I felt something release and my speech came back to normal. He told me that the very first doctor of chiroprator worked on a deaf man who was the very first patient and after several treatments he was able to talk and this is recorded in the books of chiropracter. I will be starting chiropractic treatments again tues and am hoping for the same result. Also, I will be starting speech therapy on Nov. 30th and never having speech therapy before I do not know what to expect. My ears also bother me a great deal. and now I am also having trouble breathing. You are not crazy and you are not alone. I know that feeling well because in 2001 I was told that it was in my head and that I was crazy and that scared me to death not knowing what was happening to my body and why I was so sick.
Laurie


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