In the process of being diagnosed. How did it start for you?
Posted , 4 users are following.
The past 8 or so months have been hard. It started with extreme fatigue. I've always had trouble sleeping so I didn't think too much of it at first. I just chalked it up to not sleeping enough. But when I would wake up and not feel rested, no matter how much sleep I had gotten I knew something was off. I have trouble falling asleep, and when I finally am able to, I have trouble staying asleep. I wake up multiple times a night. I have nightmares as well as waking up drenched in sweat most nights. Then about 2 months ago I started getting really bad pain. It started in my knees, feet, and legs. Then progressed to my shoulders, arms, hip, and sometimes my back too. Since the pain started, I have noticed or developed new symptoms each week it seems (sensitivity to loud noises, hair loss, vertigo, and more). These past 2 days I have experienced what I'm told is called Fibro Fog. I have never in my life felt so unlike myself. It's extremely discouraging. I feel like my brain isn't processing things as fast as it normally does. I will forget what I'm about to say, forget why I walked into a room, almost put things where they don't belong, etc. I have gone to the doctor many times in these past 2 months. She believes it to be Fibromyalgia but says it could also be an auto immune disease. I am scheduled to have x-rays and meet with a rheumatologist next week for more tests. Hopefully I'll know soon what is going on with me. I recently have started doing a lot of research on Fibromyalgia, and understand that for some people it takes years to get a real diagnosis! I'm so sorry to hear that some of you (if not most of you...hopefully not all?) have had to wait so long to get a diagnosis. I feel like in just the past 2 months since the pain has started my progression has been very fast.
What was your guys' progression like? Was it slow or just all at once it seemed? And has anyone found anything that really works/helps for fibro fog besides medication?
Thank you. I hope you all are having a better day today!
Candis
0 likes, 4 replies
Magpie2me MissSeeker257
Posted
Hi MissSeeker, Welcome! Mine started in my late 20's and I was diagnosed after many varied tests, in my early 30's. So it was progressive but I can identify with some of the same symptoms as you have. I had two children and an active lifestyle so my Fatigue was very hard to deal with. I had overall pain but of course as the years went on, the pain became worse. Before I developed this condition, I had an extreme amount of stress in my life due to an emotionally abusive marriage. I had endured a great deal of stress in my youth as well due to family challenges so it had been ongoing for some time. I really believe that stress is the catalyst to this condition. We can definitely have a predisposition but stress can certainly ignite it until it is full blown. I'm sorry that you have so much pain and other difficult symptoms to deal with! I realise that you feel helpless at times. You seem to have a good doctor however, which is a real plus. The fact that they will check for autoimmune disease as well is very professional. Could I suggest also, to be tested for Lyme disease, since many of these symptoms have been linked to this as well. There are many locations throughout the world where ticks are a real menace to human health. We have them here in Australia. I am from Canada originally and my niece has Lyme Disease. Good to rule out any other possibiity sweetie. I myself do not take medication for Fibromyalgia. I am 64 yrs old now and I have always handled it in a more Holistic manner. So diet, mild and wise exercise, plenty of rest along with some supplements is how I have dealt with it. I also manage my stress which is an enemy to Fibromyalgia. So mental health is a must because we can become discouraged and depressed when dealing with ongoing pain and the feelings of exhaustion at times. Other ladies and gents on this forum can help you with the medication aspect. Anyway, don't despair. You are doing all the right things to get a proper diagnosis. Then you will be able to do your research and you Will find ways to cope. We mustn't lose hope or feel alone in this, since it seems like practically everyone today, has some kind of health issue to deal with. So you too will be able to manage whatever you are dealing with also. Warm gentle hugs sweetie! Maggie xx
MissSeeker257 Magpie2me
Posted
Hi Maggie,
Thank you so much for your kind words and encouragement. I too am in my late 20's (29 yrs) with 2 kids (how funny we share those details). Yes, the fatigue is hard to handle with two little ones running around. I'm sorry to hear you had an awful and abusive relationship. I too know what that can be like. My boyfriend (and one of my oldest and dearest friends...we've known each other since I was 15) saved me from a pretty messed up situation. I do agree with you that stress can be one of the main triggers of Fibro! This past year has been difficult. I just got done with a nasty custody battle between my ex and I for our daughter and although the case is closed, my ex still refuses to play nice and be mature. It has really caused a lot of negativity and intense stress in my life. Along with other normal problems like money issues, personal family problems, etc.
The hardest thing about going through all of this so far has definitely been the mental/emotional aspect. I feel like I'm losing myself. I keep having the questions like "Is this who I am now?" And "Will I ever feel like me again?" run through my head. My boyfriend (who is the absolute love of my life and my biggest supporter) is definitely having a hard time with this as well. I can definitely tell he feels helpless as well. He takes such great care of me in every way that with this, he has to just watch me go through everything I am. The one thing I am so afraid of is that this sickness is going to put a wedge between him and I. I get so stubborn when I'm in pain or going through the fog that I have a hard time remembering that he's going through this with me. I worry so much about his view of me changing. I don't want him to see me as weak or incapable of anything. And I'm afraid the more time goes on that he's going to. So instead of opening up and letting myself be vulnerable, I find myself trying to do more than I should and it results in me being grumpy because I'm trying to push through the pain or other symptoms.
Do you have any advice on how to balance this maybe? I don't want him to feel like I'm pushing him away. It's definitely a struggle. I also am having a hard time not feeling alone. Not with him, because he's great...but just in general. I am afraid to tell my family and friends I'm struggling with this. I worry that they won't understand or won't believe that I really am going through something. We have decided to just keep it quiet for now. At least until I have a diagnosis. It's just hard. I'm really sorry, don't know why I keep saying that. You have been through all of this already and have been going through it for years.
You are so right about my doctor. She is great. I just hope the Rheumatologist is just as great as she is. I will ask about Lyme Disease. Do you know if that is that able to be seen through blood work? I've had a good amount done already but I know the Rheumatologist is going to order more intensive blood work. I am more of a holistic person as well and do NOT like the idea of being on a ton of different medications to ease my symptoms and pain. The thought of getting hooked on narcotic pain pills scares me. I refuse to let that happen. I also have had negative reactions to medications in the past and now get worried whenever prescribed anything! I definitely need to get my diet cleaned up. I used to be so healthy and exercise frequently but have fallen off the wagon lol.
Thank you for all of your help and being so encouraging and supportive. I am so sorry you have had to deal with this in your life and hope that you have more good days than bad!
Candis
Magpie2me MissSeeker257
Posted
Well Candis, you have had your fair share as well! That is a horrendous thing to go through with your ex. My daughter went through a similar situation and not surprising, she has Fibromyalgia as well. I am glad that you have found a kind and understanding guy. But I don't think you will always feel as bad as you do right now Candis. We have ups and downs but the symptoms can subside at times. It doesn't seem like your ex is ready to act in a mature manner at the moment but it may get better in time. My daughter's ex made so much trouble and false accusations that it took a toll on her. Since then, she has been able to gain some self worth and she has found her tongue and has stood up for herself and her son. She always felt beaten down with no voice, but her love for her son helped her find her strength. She is not vicious or confronting, but she has stood up for herself and articulated effectively how she saw matters and clarified many things in front of the lawyers. So she has gained their respect now and she has been able to reason more with her ex as well. He is starting to see how he is affecting his son in all of this. And the lawyer fees has painted a different picture for him as well. So never give up; you need to find your own worth Candis and subsequently, things will improve in other areas. You are no doubt feeling depressed at the moment but that is more likely due to your thinking. We cannot have an emotion without a thought; so trying to see a more positive side to your situation; can help you get out of your slump at the moment. Take one day at a time Candis and you will eventually work things out to your own benefit. Give yourself credit girl! You have been through so much and yet you are still functioning despite all your obstacles. Of course you would feel defeated and down. Goodness! Who wouldn't?! You are not superwoman my dear, so give yourself a break, and a pat on the back. It's time you take better care of You. And eating better is one way of showing love for yourself and self care. Just start with baby steps and begin to be your own best friend. We women are very hard on ourselves and we expect perfection often and if we fail in some area, we beat ourselves up endlessly. It is insanity! So open up with your friend and let him in. He has your interests at heart. He is a blessing to you Candis. Give him a chance. We need to reach out sometimes and allow ourselves a helping hand at times. No one is an island. ...And I am not certain how they test for Lyme Disease, so ask your doctor to check this thoroughly. It took my niece years for a correct diagnosis. Meanwhile, you know how you feel, and you must adapt accordingly. Pace yourself and don't over do. Accept your limitations; that is the key! xx
Nyxks MissSeeker257
Posted
I was told fibromyalgia out of the blue a year ago, went to the rheumatologist for a consult on my OA (diagnosed by a neurologist from CT and X-rays) and instead of a treatment option/plan had him telling me that the OA is nothing everyone has it so it isn't a big deal (wrong answer) and that I have Fibromyalgia (yet in my medical record he wrote Chronic Pain Syndrome and 18 Point Fibromyalgia Positive).
So after that he discharged me back to my GP to be cared for saying that he can't treat someone who is in the amount of pain I'm in (I wasn't even asking for medication, I was seeking non drug treatment options) .... ummm ya not the answer i was seeking either.
My GP took that as a opportunity to throw the medical book at me and try and get to the bottom of the issues, new neurologist thinks it might be MS (but he agrees fibro is part of the equation as its currently understood) that is the base issue, but also that it isn't Chronic Pain but intractable pain (IP) instead since some of the medications that have been trilled failed and whats going on meets the deal for IP.
He agrees with the Fibro but that the CPS or IP make it worse do to how the body responds, i'm just thankful that I don't have the chronic fatigue that many with fibre have to live with. I have a small version of it, but it doesn't prevent me from getting up or what not, i don't feel tired all the time just when I over do it and the pain hits a high level that makes it hard to ignore it for more then a few moments at a time.
The memory issue unfortunately for me is at the point that I actually forget if I have locked the door to the house when I leave, and will have to go back to make sure I have because I can't remember if I have or haven't dun so. Same for arming the car, i will think I did but the reality is I didn't lock it. Yet I have great memory for other things, but mundane thinks like putting my phone down then turning around and looking for the phone that I just put down.
Noramlly if something auto immune is thought fibro isn't thought since its not been proven to be related to auto immune issues - though the reality is many who have it have a secondary medical of a auto immune nature (not all but enough that its not uncommon). Thus having Lupus, RA, and Lyme ruled in or out as it is possible to have more then one medical at once and thus over lapping issues to deal with (MS and Fibro isn't uncommon, nor is Lupus and Fibro, or even RA and OA with Fibro.
good luck!