Hello and a few questions

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Pixelina
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/28/2009 9:23 AM (GMT -7)   
Hi, I'm brand new here.
First off, I'm not sure whther I have fibromyalgia or some other condition. I am a 48 year old woman, and only recently (the last few months) have developed tingling/hot sensations in my feet, then pain in my legs, centered mainly at the backs of my knees, but sometimes migrating up into my thighs/hips. I have been to my general practitioner, and the basic bloodwork there doesn't show anything. I figure it is pointless at this point going to a neurologist for expensive tests that will almost certainly be inconclusive, and my doctor agrees.  I don't have any of the other hallmark fibro symptoms, other than fatique. But then I have had low energy levels for most of my adult life.
 I am wondering whether fibromyalgia sometimes presents this way, with just a few symptoms.  I am also wondering whether any of you have noticed your sympoms getting worse  just prior to and during the early part of your menstral period- mine are definitely at their worst just then.
 
Thanks for any help!

nomadicmom
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 9/28/2009 10:51 AM (GMT -7)   
Ive actually heard that symptoms flare when mensing and during illnesses or anything that stresses the body.

dont rule out the neuro, but watch your symptoms and if they get worse or you lose feeling in your feet, you will want to consider going.

Do you have similar feelings in your hands?? There are some neuro disorders that come to mind when reading your post. So perhaps look at the link on the top of the main forum page that has "what else could this be?" or osmething similar. There are several lists of issues that can present just like FMS.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40603
   Posted 9/28/2009 11:00 AM (GMT -7)   
Hi Pixelina,

Welcome to the fibromyalgia forum. There is a thread called fibro101. It is the first thread. You may want to read on there and see if anybody else experiences the same as you.

Fibro can be a tricky disorder. And it seems to me that a lot of people with it go through fatigue feelings long before they are diagnosed. So you fit right into the plan. I hope that you feel better soon. Keep posting as we are all here for you.

Best wishes, and welcome to the group.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 9/28/2009 11:16 AM (GMT -7)   
Hi, Pixelina, and welcome!  I'm glad you found us and joined in!  Your doctor should run you through more tests to rule out other illnesses.  There are quite a few that have the same symptoms as fibro.  Usually those are ruled out first before a diagnosis of fibromyalgia is given.  It does feel good when you do get a diagnosis because then you will be doing the right things to help yourself.
 
As suggested, check out the Fibro 101 thread.  There is a ton of information there that could help you.  Back posts are loaded with things too. 
 
I'm happy that you are here and I hope to hear more from  you soon.
 
Sherrine
 
 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Pixelina
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/28/2009 11:42 AM (GMT -7)   
Hi all. I would dearly love to have a hard and fast diagnosis, but am just afraid that the whatever this is I am dealing with is not severe enough to be likely to lead to any conclusive results from a neurologist at this point. But if anyone here has experience to the contrary, I would like to hear about it. If early testing will show anything, I would like to do it, and will of course report any further developments to my doctor.

Post Edited (Pixelina) : 9/28/2009 12:46:44 PM (GMT-6)


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/28/2009 11:55 AM (GMT -7)   
Hi Pixelina and welcome. My fatigue started about your age, or at least when it got so bad I thought something was wrong. Okay, let me back up a little, extreme anxiety was the first problem but I believe that was due to a very stressful family situation that went on for what seemed like forever and I was put on meds for the anxiety. My doc and I both made excuses for the fatigue in the beginning peri-menopause, age and the meds I was on for the anxiety which made sense. It kept getting worse til I got to the point of only being able to go for a few hours a day and dragging myself to the shower was a job so I went to doc and told him something was really wrong. We started testing and found out I had sjogren's which has a lot of the same symptoms as fibro, I accepted that for awhile, but then had a feeling there was more wrong than sjogren's. I knew nothing about fibro except it was a few aches and pains so didn't give that a thought and what pain I was having I could explain away. Many test and about four years later I had my first full blown, "been beaten with a baseball bat", flare which just happened to happen on a day I had a doc app. He did the tender point test and bingo everything fell into place for him. He told me to go home and research fibromyalgia and when I did I was devastated to find out this is what I had and there was no cure for it.
 
Up til about two and a half years ago I still didn't have the pain that so many on here have and it was mostly in my back, shoulders and shoulder blades. The pain at that time never stopped me from doing whatever I wanted but the fatigue did. Then our family suffered the horrible loss of a loved one and life stopped for me for a long time and I have never gotten back to where I was before. I also have myofacial pain syndrome, MPS, and have knots in the muscles that just keeps spreading, I think I have knots on top of knots.
 
I think one of the reasons it took so long for my pain to get so bad it became a problem is that I was on amitriptyline for the anxiety which is rxd for fibro. I tried cutting down on it spring before last and went into a two week burning flare from hades but as soon as the level got back up to 100 mg it went away and I have not had that kind of flare since.
 
Fibro starts so many different ways for people physical or mental stress and sometimes for no reason at all.
 
Does it hurt if you lay with your knees together??? This is something I can not do without pain. I also have the burning and numbness in my feet which is neuropathy and I'm not diabetic.
 
I guess for some of us we have to wait til fibro shows all of it's ugly symptoms to get a dx.
 
You are more than welcome to hang with us and hopefully learn a lot more about fibro.
 
luv and hugs
Marlee
 
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


TreeBo
Regular Member


Date Joined Aug 2009
Total Posts : 114
   Posted 9/29/2009 3:49 AM (GMT -7)   
My fatigue started in my late teens. i never had any pain until late 20s. I'm now in my 30s and was just diagnosed last year with FM. Don't rule out anything until you have been tested. even if a test comes back negative at least you have the peace of mind knowing it''s not that. an actual diagnosis can take time, but don't give up. Whatever is causing your pain will be found. And once you know for sure you can start treatment. Hang in there, and don't be a fraid to be insistant on some test. I had to be a little demanding with my Dr. But I didn't want to miss anything. even it seemed far fetched. Good luck on finding the source of your pain. Keep us posted.
Treebo.


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 9/29/2009 5:19 AM (GMT -7)   
As a child I had horrific pains in my legs particularly at night. My mother had them also, and she later developed MS. I was always told they were 'growing pains" but I've recently read that there is no such thing. The other possibility that springs to mind is PAD; Peripheral artery disease but that doesn't hit 20's year olds unless you eat Big Macs five days a week. So, for peace of mind; why not have your PCP rule out Fibro by testing for the tender points.
Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.


jla72262
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/29/2009 7:31 AM (GMT -7)   
I have been living with Fibro for 2 years now. My main symptom is a dull, numbing, sensation in my legs that never goes away. When it first came on, a friend told me I had symptoms of MS. Was checked and all tests were negative. I live with this every day. In the morning, I take my Loritab 10 and my hour to just get my body moving, and hope that my day will be stress free. If it's not, then it hits my neck and shoulders with a vengeance. The muscles knot up horribly and the headaches begin. I see a massage therapist regularly when it flares up. And on those days when I do feel good, I tend to overdo it, and suffer for several days afterwords. Normally, in my hips. I could not manage my days without my Loritab. And yes, it all gets worse during menstruation.
 
So, I have very few of the other symptoms that you read about, but am noticing more and more the brain fog and memory loss, which is the scariest for me since I own my own business. Am getting very concerned about my future ability to manage the mental aspects of my livlihood.
 
I started Lyrica last week, the following day my brain could not function, I cried, I was a total basket case emotionally. The sad thing of it was, the sensations in my legs was gone for the first time in 2 years. But I threw the Lyrica in the garbage, cuz I would much rather live with the physical than the mental. I am now researching Guafenesin therapy, and I'm on my 4th day of that, and feel like there may be some hope. No side effects yet, and feel okay. cool
 
Good luck, and hopefully you will find what works for you, as this is truely a personal journey that only YOU will be able to find what works the best.
 
 

mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 9/29/2009 8:23 AM (GMT -7)   
Hello, and welcome to HW.

Fibro is such a confusing disorder, and can be hard to dx. At first I didn't believe my doctor when he mentioned it, especially since after a visit to the rheumatologist, he didn't say for certain I had it b/c I didn't have many pressure points. But I know that they have run other tests on me which were negative. I also know that although I don't have the severe pain many others have, I still have pain, achiness, fatigue, etc. etc. that I have learned to better control and/or ignore.

My symptoms started off like you, very vague. I had pain in my hands, aching in the thighs, and fatigue. about a year later, I had tingling and numbness in my hands and face, and more pain. I also had burning in different spots, like someone had lit a match to me, or spilt hot water on me. The fog at the beginning was horrible, and I was suddenly awake around 4am every day. I probably made all my symptoms worse by worrying over what was happening to me.

Read posts and ask questions. A great piece of advice I got on here while waiting on doctor's appointments was to treat by body as if I did have fibro. It is a healthy lifestyle anyway! Exercise, make sure you stretch, eat wholesome foods, and try to get plenty of rest, and use heat on sore/achy parts. All this will help you feel better as you figure out your body and any changes that are happening. Like the previous poster said, each of us is unique. You need to find out what works for you.
possible fibro and trigeminal neuralgia
50 mgs amitriptyline

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