New to group and Fibromyalgia

General
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Hi Everyone,

I am so glad I found this page. I just got a diagnosis Monday for Fibromyalgia. I just could not figure out what was wrong with me. I have had a stressful year but I was still pretty active with my husband and kids, then it was all of a sudden the pain came. Now I can look back and I see the RLS that I had been dealing with, the migraine headaches, the hip pains, fatigue, and depression. But the horrible joint pain and muscle pain that was something new. Nothing over the counter would help and I kept wondering how can a person go from hiking and biking to constant pain everywhere all the time.

My kids have been disappointed and asking me why I just can't go do stuff. That is depressing in of itself. Luckily, my husband is very supportive. He took me to the doctor Monday (we usually go together because its an hour drive) and the doctor was able to answer all of our questions. He put me on Lyrica 50 mg. I take 2 a day but he said it will increase over time. Also to do an anti-inflammatory diet will help.

Anyways, I need all the advice I can get. What do you guys do to ease the pain. Also I am finding that some people don't really understand this, I even had a family member roll their eyes at me. So I am wondering, do I even tell anyone at this point? Its all so new. I was really depressed yesterday about it.

Sorry to go on and on. I need help though.

Thanks!! Teresa

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I am so sorry to hear all this. I was like you I knew something else had to be wrong with me besides what i knew. sure enough there was i found out a few weeks or so ago.

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Hi Teresa,

Welcome! It is so unfortunate that people act as if this condition isn't real or just in the heads of hypochondriacs. You know something is wrong and don't let other peoples ignorance ever make you doubt yourself. I am very discerning who I tell and who I don't. You might keep the diagnosis within your immediate support group (family/friends). I too am on Lyrica. I take 150mg twice a day. When the pain is at its worst, then I'll take a hydrocodone, otherwise I try icing and heating pads, doing light stretches given to me by my PT. Learning to slow down and rest is vital in controlling your symptoms. Lastly but not least is getting some exercise. You're not alone.

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Welcome to the group. It is hard for people to understand when at times we don't understand. For a very long time medical professionals were trained that fibromyalgia is not real its just depression or female problems. So I guess all you can do is educate your loved ones and friends and let the nah sayers of the world go on as they have always gone on. I do not waste my time with anyone you doesn't believe how I feel. It is my misery and I deal as best I can. I understand about your boys my son is 14 and he feels like I don't love him because I can't sit out in the hot or cold to watch him play football. I have gone to a few of his basketball games and almost vomitted from the pain. I can not take narcs and I just use OTCs. A trick I have learned to help with pain and can also help with the kids is if I am playing a video game or cards or working a puzzle I don't notice the pain that much. The brain can only process so much information at a time. It doesn't always work but it helpsmore than not. Again welcome to the group.

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Hi Teresa, I'm sorry you are going through all this too!! When I have a flare up nothing will help with the pain. Being stressed and negative can make your symptoms worse. That's what my doctor told me anyways.. I was diagnosed with fibro on May 23, 2014. It is extremely hard to talk to family and friends that can't relate to our pain. My husband gets it the most because he sees what it does to me. One of my best friends that I've known since first grade told me she believes I have an autoimmune and fibro but she doesn't think it's as bad as I let on. She thinks it's all in my head!! I have never been one of those people how exaggerates their problems. She knows that. It made me so upset that I cried the whole week and I'll still feel sad about it. From now on I'm going to tell only the people who are really concerned about me. It sucks that someone so close to you doesn't believe you.. You just have to put your health before them. Do what's best for you and your family(husband and kids). Hang in there! (HUGS) Xo.. <3

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Welcome, you are among those who will understand you and accept you unconditionally. I’m so glad you found our group!
My med is gabapentin. I take one in the beginning of my day, then another 6-8 hours later. Before bed I take two. They are 300 mg. I feel much much better with this medication. I have tried Cymbalta, I couldn’t tolerate that. Another drug in combination would help me more, but it’s trial and error.

My flares come with weather changes, stress, if I don’t get enough rest, and when I am sick. My biggest flares are due to stress right now…I am in a stressful job and training is rough. I feel like I am very sensitive to other peoples emotions. If my partner at work is very anxious, it feels like it wears me out. My body tenses and then my symptoms start.

Things I do to increase my comfort level are very varied. I have a heating blanket I put underneath me, that helps with my back, neck, and outer thigh areas. If it’s a minor flare, usually a heating pad on my lower back helps. My forearms hurt, so I wrap the heating blanket around my arms. My arms are my indicator, when they start aching, I know it’s about to hit the fan. To what extent is due to how I react. If I immediately start my steps, sometimes I can keep it to a minimum. I don’t do this as a norm…who could? I usually end up pushing myself too hard and pay for it for days. You have to find your medium. I just want to beat this monster. I feel like if I am too sedentary, it will make me worse. Physically and emotionally. I don’t want to become more unhappy with my body, I know that sounds vain. I don’t want to become recluse either. Lots of time I hurt and don’t want any touching. But my heart still needs physical contact with others.

I had been going to warm water aerobics at the Y. My schedule at work has changed for a few weeks, so I am currently missing that. Sometimes afterward i get in the hot tub or the steam room. Heat is my biggest help. I also take Tylenol occasionally,if I have to work that day. I try not to take it often, for my livers sake, lol. I had been taking a lot if aleve, but that interacts with the gabapentin.

You are more than welcome to send me a friend request.
I know that my response was wordy, but I hope that others will follow my lead and you can develop a stable friend base. I think that the more testimonials that are given, the more “normal” we can all feel and the more we can fight back agains this monster. I don’t have anything but my experience and support to give, I hope you find my information helpful. I don’t want you to take it as being a Debbie downer, just as an example.

Crissy

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Hi Teresa. Welcome to the fibro group.

I'm sorry that you're experiencing fibro. It's everything that you've described. And the tough part is that family members are sometimes the least understanding people when it comes to fibro. I think it's that they don't understand it at all and think that you were fine before so why aren't you the same as before? But you're not. I have no idea what puts people over the edge and into fibro but it seems that some sort of stress, physical or mental, seems to be a common factor. Like you, it oftentimes seems to creep up on us at first in little ways, like hip or joint pain that won't resolve, and then, suddenly, it's just terrible all over.

One thing that might prove helpful is getting your vitamin D level checked by your doctor. Many of us are very low on it and we need to take a few mega doses in order to get back to the normal range, and then take regular doses. You'd want to discuss any possibility with your doctor.

I can't really say what's best to do with informing others. I would think that you tell people whom you're comfortable with. But be prepared for people to expect you to be the same as you were before the fibro. My sister and mother keep demanding that I get more medical help so I can "get better and get back to work and living." This, after 3 years of being diagnosed with fibro. It can really hurt when the people you love continue to believe that fibro is some slight illness that you just traipse through and then keep going as normal. I've tried to explain to my mother and sis that it's as life-changing as Multiple Schlerosis. I don't know how to make it any clearer to them. So please get your emotional armour ready in case you get similiar comments.

I find Lyrica to be helpful and I hope it helps you too. You may need to increase your dose as time goes by, as your doctor suggests.

It's fantastic that your husband is so understanding. That is a wonderful plus to have in your favor. As for your kids, I would suggest trying to find some on-line reading for them to look through, so they get a better idea of what fibro is like. You could even show them some of the discussions on here, so they'd understand that it's not only you who is suffering from fibro.

What do I do to ease the pain? Take a combination of Lyrica, Effexor and Nortriptyline for pain, mood and relaxation. All kind of work together to help make things less painful. I also get plenty of rest because when I'm tired, I get to feeling worse and am mentally not checked in at all. I also put SalonPas patches on the sore areas (found in any drug store near the Ben Gay.) I also take Ibuprofin occasionally. Ice is a big helper for the hip pain. Oh, and i just had a procedure called radio ablation, which is a procedure that burns a nerve in the back that causes a lot of my hip pain. For whatever reason, it's arthritis that radiates down to the hip and hurts like heck there.

I'm sure you will get a lot of useful answers, Teresa. Please feel free to come back and learn more about fibro. it really does help.

Hugs

Petunia

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Alyssa,

If your friend only knew what she was really saying! To accept that you have an autoimmune disease PLUS fibro but then think it's all in your head??? I'm sorry but that's the stupidest comment I've heard in a while. I guess that she has no earthly idea what an autoimmune illness is like nor fibro either. I only have the fibro but on occasion thought I had more. Some reading about MS made my eyes nearly pop out! How anyone can think that any autoimmune disease alone, let alone with fibro, is in your head is nuts.

Sorry to have popped in on your discussion with Teresa but I just had to comment when I read what your friend thinks.

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It’s ok, Petunia. I know… I’m not one to exaggerate things either. It is NOT all in my head. I don’t want peoples sympathy, nor do I want their pity. I just want them to be there for me. I told her to look them up so she’s more awear of what’s going on.

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Hi Alyssa, I am new too. I am sorry to hear about your Friend.
I know shat it’s like to have someone not be there and not be there
For you. I have my own Husvand thinking I am lying about the Fibro fog. That’s all I will say about My husband. I try not to disrespect him. It hurts never tge less.

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Thanks, Petunia. I know.. it's sad that someone I trusted and am there for don't believe me. O well there is nothing I can do about it. I'm just going to tell people to do the research and figure it all out for themselves.

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Thanks, Janelle. It's really hard to explain what we go through to the ones we love. I would have your husband do research or even join the group so he can see you are not the only one affected by it. My husband told me if he didn't know the person I am he wouldn't believe me either. He knows I don't bs anything and I have to reason to lie. Hang in there. Hopefully your husband will come along. (HUGS)