newly diagnosed. need all the help I can get

[kerikay]

Hi All,
My name is Keri as you can see lol. I'm new to the forum and also newly diagnosed. I'm 21, and to be honest utterly confused and lost. Ummm well first I'm think I'm in a fibro flare. I went to my PCP like last month and complained about pain and also shaking in my hands ( I was eating a apple wedge on day and my hands were uncontrollably shaking) she recommended I got to a neurologist but the first appt is in May so I told her I wanted to be reffered to a rheumatologist she actually said no and I applied some pressure to her and she finally sent a referral so I went on 3/2 and that when I was diagnosed mind you I been experiencing some sucky pain since December and im really just over it anyways. The rheumy diagnosed me with fibro she proscribed me amitriptyline and folic acid because that was low as well ummm I been taking it for a week and I'm still in ALOT of pain sometimes I can't get out of bed and I been missing a lot of work so it sucks I called my doctor today and told her the amitriptyline doesn't do ANYTHING for my pain she said to try it for 3-4 weeks. Ok, that's all good and well but I'm still in a massive amount of pain can can't budge from my bed. Sigh. So she added on a medicine called gabipentin Idk about I can give it shot I really just want the pain to die down some notches so I can go on about my day. I'm not used to this at all I'm so used to bring a caretaker my mom has a different chronic illness and Idk how to even take care of myself these days. I'm trying warm packs and cold packs but I just don't know the pains gotten bad to the point I considered going to the ED but I read other forums and I got scared to be labeled as a "drug seeker" or a "cry baby" sorry this is a lot of venting I just really need some suport and help P.S I learned early fibro fog sucks and Idk what to do about that either Help...

 

[Misschloe]

Hi keri, fibro is quite scary and hard to cope with even when you have been diagnosed for years, I am still learning after years of experience, fibro presents different things in different people , but one thing we all share the same is the pain and the fatigue, your young , so this is going to be a difficult process for you to get your head around, but you will, and you will learn to manage your fibro in your own way, the meds your doctor has put you on are the ones they use to treat fibro, and your doctors right you will have to give them 4 weeks at least, the meds themselves are not miracle workers, but they do help give them time, getting stressed will only increase your pain level, try to relax take time out, your are not going to be able to go full steam ahead like you are used to, pace your self, this is one of the key things of managing fibro, over doing it you exhaust your self , fatigue just increases pain. It's all about looking after yourself, as time moves on you will get to know how much you can do in a day , what things will totally wipe you out, small steps, slowly does it , you will get there in the end. This is a life long condition it's all new for you, but remember if you are not sure about anything, just ask your doctor, or share on this forum, lots of us have had ailments over time, and been scared not knowing what they are or what the outcome, bet if you've got it some one on here has had it and can relate to how your feeling, as for fibro fog I could not handle it at first I thought , I was loosing my sanity, but you over come this , now when it happens I say can't remember having one of those days, keri this is scary but you will get there it just takes time, lots hugs to you

 

[Eyesup]

Hi Keri, welcome. I'm feeling your pain. I was just diagnosed in December (no thanks to a crappy gp) my ruematolgist put me on gabapentin and when I asked how long it would take to feel a difference I literally burst into tears. I couldn't fathom a month and it may not help!!! TG I started feeling better by my third week. The pain and the fog started lifting together. The second week I called the office crying asking to up my dose instead the dr. Called in a prescription for Volterin...if you have it in the UK have your doc. Prescribe it. (If not there are some great non prescription in alternative forum) It was a game changer. I built a tolerance to it in less then a month but by then the gabby had started working. Getting the meds right can be tear jerking.
Fibromyalgia is difficult to say the least, but it is doable. It takes time to just grasp the diagnosis let alone navigate it with brain fog! BRAVO to you for insisting your doctor listen to you. You are already on the right track.
hope this helps a little. I know you're probobly feeling a little alone right now. But your really not.

 

[kerikay]

Thanks for the advice and the support. I am really sad because my rhuemy said its going to get worse as the years go by and the meds are trial and error i really don't feel like being a test subject until something works. I might get fired from my job because i missed so many days i just cant get out of bed. first off the pain is really bad and is everywhere and idk if its the medicine but i just feel really dazed out like im here but in not. the fibro fog ha been really bothering me and its hard for me to even explain to people

 

[kerikay]

Thanks, Eyesup and Misschloe Its just really to take in i feel horrible i cant even get out of bed much less go to work which i might get fired from because i been missing quite a bit of time from work because the pain has been so bad for the last couple of months. My doctor isnt the best she doesnt really care much and it seems like im a bother to her my rhemy saw me one time and said that she wanted me to follow up with my PC. today i tried the gabby and i feel really dazed out. i really dont want to wait 3 weeks for the pain to stop i just want something to just bring the pain down a few notches. I feel really alone i dont know how to explain fibro to my family it so frustrated they think im a young girl who shouldn't have these things, but the reality is i do and it took for ever for someone to find out what was wrong with me i just so annoyed i with the fact im in pain i ant some type of relief the fibro fog just really aggravates me im so tired today and i just dont wanna deal anymore

 

[Misschloe]

Hi keri, hang on in there, your reumy is right the meds are trial and error, that's not to say you will always feel this way, the side effects of the meds tend to subside after a while , so stick with them gabby is difficult med to tolerate for some but your side affect should disappear over time, the tiredness could be combination of meds and fibro, give your body time to adjust , rember this is new to you, so it is to your body, the more stressed you get this will increase your pain levels, more pain more fatigue, it's a vicious circle, don't over do it, take time to relax, get to know your boundaries , how far you can go before your pain is out of control, take warm baths , hot water bottles to bed, once you get on top of the medication , learn to pace yourself, get quality sleep, the pain will not go away, but you will learn to manage it and have a better quality of life. Sit down with a family member , one you trust that will listen to you, show them the info on fibro, tell them how you feel, and what your reumy said, take them next time with you to the reumy, life gets better fibro, it just takes time and a lot patience, your not alone, lots hugs

 

[Eyesup]

Stay on top of the gabby, don't miss a dose, I know 2 more weeks sounds like a lifetime but it will come to pass no matter what so best to be in a better place. What dose are you on?
Did you check on a script for Volterin? I'm telling you it saved my sanity.
I meant to ask u how your sleep is, are you getting GOOD sleep? From the sound of your thoughts I suspect your not.
Family can google fibro, for now just tell them your wirking on getting some of the symptoms under control. They'll still be there when your feeling better. Heck, invite them to snoop through this forum.
Mid lie told you right, warm baths (Epsom salt)hot water bottle and I would harm anyone who tried to take my heating pad! I even have a power conver for the auto so it can go on rides with me!
I understand your concern for your job, unfortunately if you can't do it you can't do it. You have got to take care of yourself first or a job would be no use anyway. Worrying about it is only going to slow your progress.
I can tell you are a strong person, you take your responsibilities seriously and you have probobly been told your whole life "you worry to much" I could be wrong. I c this because that was me, worry no more fibromyalgia is going to teach you worry is useless. Let go and try to rest and relax. I mean this in the kindest way. Let the worry go.
; )

 

[kerikay]

Sigh Fibro won this battle, I just feel exhausted literally drained my back hurts along with my spine and my right leg. My Ruemy pushed me back over to my careless pcp. im taking 300mg gabby 3x daily and amitriptyline 25mg one pill at night but i literally have to pop them down in 2's to take the edge off the pain im trying to be patient but the pain is winning i called my pcp to see if she could prescribe me something that worked in the moment like a muscle relaxer or something of course she said no....so i almost had to go to the ED. But my mom speared me some of her relaxers which saved me and i got some type of relief. Gosh i never imaged that i would feel so much like shit (excuse my language) I pushed to go to my friends house last night and i basically just hung out on her sofa because i didnt feel like doing much of anything else. I woke up this morning and i was literally so weak i felt horrible!!!!!! i pushed to go to work at 3:15 and around 5 i felt excruciating pain. I called my mom to see if she had any words of encouragement but that was a epic fail he words were "You can only tolerate to work one day a week and you mean to tell me you cant make your day, if you wanna come home and sit around and make no money be my guest"......i was honestly shocked and really sad i told her she just doesn't get it. she has another chronic illness called Sickle Cell im usually her care taker until i been sick and dealing with my struggle. she said "oh well i feel pain i feel what your what your feeling" i said to her no she doesn't. she always has to be the center of attention she uses her sickness to throw a pitty party its like she is in competition with me Anytime i tell her about how im feeling she always talks about herself. that's why i feel so odd telling her about how i feel my sister kind of just writes everything off and the significant other is complaining over the flu. i dont have much of a good support system which sucks. i ended up making my day at work despite the agony i was in. but the fibro fog literally almost had me in tears i couldn't remember. i was having getting my thoughts out and it made my job so much harder. Gosh Im really sorry for rambling but i just needed to talk i guess :-(

 

[remnant]

Depression is eating you up and it is compounding your condition especially now that you fear being fired. Stress should be avoided by removing yourself emotionally from the situation as if it is a life and death situation. Talk to your employer. You should make lifestyle changes like exercise, joining a fibromyalgia support group as well as keeping a journal to keep track of your diet and activities that trigger fibromyalgia so as to learn what to avoid. A hot bath in the evening will address insomnia and ease pain after taking magnesium supplements. Wishing you quick recovery.

 

[kerikay]

I think depression is coming on because the things going on around me. it really sucks my job knows im sick so they've been decent to me i dont really know about fibro support groups. Im a dancer well "was" before i've been in so much pain i try hot shower warm packs cold packs everything its just i feel like nothing is working to ease the pain much its just really frustrating. Thanks for the advise Remnant

 

[Eyesup]

Lol...your apologizing for rambling on a sight that's all about rambling! If we can't support each other, I don't know how we could expect non-sufferers to understand. Even the kindest of people can't understand the pain we suffer, there is no 12" spike driven through our hands, no blood gushing out of our ears, no gaping holes in our chest. everybody has their own opinion of what the worst imaginable pain must be, for me I always thought being set on fire would be the worst, but now, now I think a bad day of fibro might just be it. I've never asked my husband to understand my pain but I do ask that he respect it. Your not getting that from anyone. Fibromyalgia is very lonely. Even your doctor can't truely understand what your going through. It's bad enough they don't get it, but sounds like your mum is trying to guilt you out of it. Your her child, if she's suffered her whole life the last thing she wants is for her child to suffer. Might want to let her know you her support is the only way she can help you. Just as her illness is real so is yours. What ever is going on there, it's not healthy for you, you HAVE to take care of you before you can attend to anyone else.
Fibromyalgia is part of your life now, eventually you will control it more then it controls you. But don't let anyone else control you negatively. The fibro is more then enough.
Please keep rambling. If not for rambling we wouldn't have this forum! ; )

 

[kerikay]

Thanks Eyesup, you commenting made me feel better. Being on the forum being able to open up makes me feel better because other wise I would be so alone dealing with this. Talking to you and all the other member comforts me and gives me a sense of reassurance that I can make it through this I just have to master being able to handle the condition. With me being diagnosed so early also made me feel alot worse knowing that I will have it for the rest of my life. I feel like nt meds aren't working much and its been about 2 weeks, my mom has been giving me some of her muscle relaxers and they been working I believe what she's giving me is Valium. I'm out of Amitriptyline because I have to take 2 pills instead of 1 I have a refill vur my insurance says it to soon to get it refilled and I see my pcp Wednesday and Idk how to bring up meds to here she doesn't wanna prescribe much of anything to me so I feel like talking to my PCP about meds aren't going to go well at all (any suggestions on how I should have this conversation with her) Im not sure how to talk to go about addressing my mom I currently live with her so I kind of just not said much to her because of what she said yesterday. I pretty much been in bed all day because pain and I also didn't get much of a great sleep either so I will be resting

 

[Trellum]

I hope you feel better soon and so sorry to hear your mom is like that, mine does the same... I dare to say something hurts and shoe goes on to say she is in more pain than me and blah blah blah. She sounds like she might be a bit narcissistic, I grew up with a narcissistic parent and they do that... my biological father does the exact same. It's all about him, much worse than my mom.

I feel for you, I hope you can move out soon... God knows I'll be jumping of joy once I can get away from them... I know it might sound mean, but God... no idea how I could stand all this stress. I wish you can do the same soon. I truly do! i know a lot other things have happened to you while living there (I know because my parents are both very difficult), and it's so hard and adds to the depression. Best of luck!