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Just diagnosed...pls help!
5 Replies
Godhelp - December 7

Hi all,

I am so glad to find this forum. i just got diagnosed after suffering for 14mon after the birth of my first child. It started out with the rebound insomnia when i stopped taking ambien after 3mon of taking it everyday. Then the pain merges one at time. I believe my sleep issue brought up this condition at lest for me. But i am still not convinced that my symptoms are from FMS. I still feel there is something else going on. Currently, everyday i wake up with stiffness in my neck, shoulder and all upperback. Then my head will start to tighten up along with my neck, when this happens, my eyes will start to get red and muddy looking and i end up getting headache which is most similar to tension headache. I also have lower back pain, and sporadic shooting pain that is coming from my arm and calf. I also don't get into deep sleep, so i am always tired even though i get 5-6hrs sleep a night on good days. I am very frustrated and depressed as a result of that. my life is perfect other than this condition, i have a good husband and healthy boy. My main symptoms is basically this tightness(stiffness) as if someone putting my head in vice and neck. I also have vitamin D deficiency(18). Is this the only thing that is going on with me. i don't know which doc to go to anymore, i am so frustrated with all of them. I break down crying in the rhemutologist(sp?) office the day she diagnosed me with FM by tender point test. How do i break this vicious tightness cycle? Please give me your advice.

Thank you so much!

 

Canada17 - December 7

First, find yourself a good massage therapist. Unfortunately, the pain and stiffness in your neck, shoulders, upper back is common. The headaches that you are feeling are tension headaches, probably coupled with the fact that you aren't sleeping well, and your stress levels. The headaches can also affect your vision which in turn makes your headaches worse. It is a vicious cycle.

I know for me that I carry all my stress in my neck and shoulders and I get very painful muscles spasms when I am REALLY stressed out - to the point that I can't even move my neck.

A massage therapist will help to loosen up those muscles. Explain to him/her that you have FMS, if he/she doesn't know what it is or doesn't think it's real, find a new therapist. I found massage therapy to be very effective at helping to relieve the pain and tension in that area. However, it can sometimes leave you feeling a little bruised if they work deep. If you don't like it or can't handle it, just tell them that, they should be very understanding and accommodating.

I urge you to read everything in the blue boxes on the left side of the screen. There is so much good, helpful information. Find yourself a good book on Fibromyalgia - I picked up "The Idiots Guide To Fibromyalgia", it helped me so much.

We all know the frustration of dealing with doctors, especially working up to being diagnosed. I would love to be able to tell you that now that you have a diagnosis, the hard part is over. Unfortunately, there is no true cure for FM and each person suffers differently. Therefore, our treatments differ. Some people respond very well to pharmaceuticals, others (like myself) can't tolerate most prescription meds and even some OTC. Try to remember that FM is not fatal, and there is no indication that it will shorten your life expectancy. So long as your doctors have gone through all the diagnostic tests to rule out any other disease, you can be satisfied with your diagnosis. From what you have told us, it does sound like you have FM. BTW, Vit D deficiency is very common for us.

Arm yourself with knowledge, when you begin to understand the mechanics of this dis-ease, it does become a little easier. Please research food sensitivities, or talk to your rhuematologist, they should be able to help you - so many of us can't eat even the healthiest of foods. (Check out the diet forum for more on that.) I would highly recommend trying to figure out if you are eating/drinking/consuming anything that will make your pain worse - that why if, and when, you start to take pain medication, you won't need as much.

Above all, remember that you are not alone, no matter what anyone says to you, no matter how much pain you are in. You will always be able to find comfort and understanding here. Sometimes we even joke and laugh!! lol

Welcome to the group.

 

1joyjoh0624 - December 17

I saw you only have had one reply so I wanted to reply. Fibro is a vicious cycle like a "catch 22" Fatigue and stress and/or over exertion start the cycle which leads to pain which brings anxiety and depression and stress which leads to fatigue which brings on pain and tightness. so then you need to try to relax and get some sleep but you can't becaus of the pain and so on and so on. you need to break the cycle which is very hard to do. but once in a while you will have a better day! try to remember what you did and try again for hopefully another good day!

 

jsanderscst - December 17

Hello.. I also have just been diagnosed with FM. I have had chronic pain for years. I have had a bad back forever.. I see pain management every 3 months for injections, for the past 3 years. Im not so sure if the FM contributes to my all over pain.. I always blamed it on my back. Anyways.. it was still very scary for me to hear That I had FM. It makes sence now. I am learning as much as I can about FM. So good luck.

I am acutually up at 4 am because of pain. I have to keep moving when I hurt. Yesterday I had a lazy day.. Lazy days are not always good for me. I tried a movie and not pushing so hard today. Well it didnt work for me. I know there is a happy medium somewhere. So Im still learning what my limits are and also what I have to do to make the pain better..

So good luck to you, I suppose we will learn together. This site has been very helpful to me so far..

 

axxie - December 17

Hello goldhelp, one day at a time. I had the same thing back 17 years ago when my daughter was born, my doctor explained that my hormones and vitamins where not up to par and that I should immediately start taking a multivitamin for pregnant women, so I did, taking two a day in the morning after I ate a piece of toast to keep it down. Those vitamins help me alot, it gave me a sense that I could function during the day, she also prescribe some medication for my tension headaches, I took those when I got home, and that I could pass the baby to my husband, and go lie down in a darken room for a few hours.at bottle saved my life, it gave me encouragement, also the doctor treated me for tension headaches, I was out of it for a few hours a day, where my hubby took care of the baby and tried to get some sleep in a darken room. It provided me with some rest, couple with massage slowly I started to feel better.
Being diagnosed with fibro is not easy to accept, granting that I think you should start with the vitamins regiment and taking time off to start feeling better your next step is to start to eat good meals. Start with breakfast, if you can't make yourself any breakfast why don't you go with a meal replacement to start. Stop drinking coffee and drink more water. Take some time to be by yourself, go to a book store and just look at books and maybe read a couple of chapters uninteruped.

I wish you good luck to you and hope you will try some of the suggestions that we all have provided to you, the best thing I would do for yourself is to buy those vitamins (even if the baby is a year old, they won't hurt you) and might do some good for you.

Take some time to be yourself, away from the confinement of the house, and rest your mind, the tension should ease a bit.

 

graceful1 - December 18

Hi, I am sorry to hear you are having such a tough time, but I can definately relate!

I have many of your symptoms and also had vitamin d deficiency. Make sure you take your vitamin d supplements and get your levels checked periodically, it really does help me.

After years of tests my diagnosis is fibro. Heating pads help alot, i also have the sticky ones that you open and put on your back and shoulders. Do this at the first sign of tightness. Once it really starts it is much harder to fight.

Get yourself a good pain killer that doesn't make it too hard for you t function. Ultram (tramadol) has helped me, sometimes you will need more than that unfortunately. I can take one and still function and it can take the edge of even when it doesn't kill the pain. At night I take tylenol pm or aleve pm. It helps me sleep a little deeper but doesn't make me a zombie. Earplugs help and you can still hear but it just slightly muffles things. An electric blanket has helped as well.

My best advice is to stop fighting your body and yourself. Listen to your body when you need to slow down, if you catch it early sometimes you can prevent a major flare. Start tracking flares, notice what you ate, where you were, what you were doing. You will be surprised at what can affect you, but you ca have control once you know!

I know it is frustrating and confusing. Continue to educate yourself about fibro, read the forums and info boards. You are not alone.

Best wishes to you!
Tracie

 

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