New here and newly diagnosed, I have a question

All your fibromyalgia experiences, questions and answers.

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New here and newly diagnosed, I have a question

Postby babymable » Wed Mar 05, 2014 4:50 am

Hi, I have just been recently diagnosed with Fibro. Is it normal for everything to seem to hit harder all at one time. It just seems like the last 2 months every thing has gotten worse. My sleep patterns are totally screwed up, I am always so tired and yawn almost continuously. My restless syndrome has gotten worse, migraines have started. I am so stiff in the morning and it feels like my CT is coming back despite having surgery on both wrists 4 years ago. Is this common with people with Fibro.

As well I have noticed that my memory sucks lately, I can't concentrate and my spelling is getting bad. Are any of these fibro traits.

I just don't get why it feels like everything is just hitting me harder now the last 2 months. The concentration thing is really bothering me tho as I hate feeling like this. But it would make me feel better knowing that it is a common thing.
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Re: New here and newly diagnosed, I have a question

Postby leonaviggs » Wed Mar 05, 2014 6:43 am

Sounds pretty normal to me, and I have to say expect a few more symptoms to pop up along journey! Try and stay positive tho, easier said thandone I know lol x
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Re: New here and newly diagnosed, I have a question

Postby Eltham girl » Wed Mar 05, 2014 6:43 am

All typical symptoms. You are not alone. Go to your GP and sort out your sleep first. Take each day at a time and try not to get disheartened. At least you know what it is now and you can start finding out more. Take care. X
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Re: New here and newly diagnosed, I have a question

Postby Keri2181 » Wed Mar 05, 2014 8:25 am

I've been told to expect flare ups which has happened. I have an awful stiffness in the mornings and given sumatriptan for migraines. Fibro is nasty and I have a 2 year old son and its hard to keep up with him
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Re: New here and newly diagnosed, I have a question

Postby Amberk » Wed Mar 05, 2014 9:47 am

I'm the same Hun, it is nasty. I was an author and now i get stumped sometimes when my 12 year old asks for a spelling. I have found it hard with both my kids and now my grandson, cant play with them i cant even pick my 1yr old grandson up!
its just the,way it is bummer i know. Cant say you get used to the pain and all that comes with fibro but you learn to cope in your own way.
good luck luvvie x
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Re: New here and newly diagnosed, I have a question

Postby painprincess1 » Wed Mar 05, 2014 10:44 am

Yes love very normale.im stiff every morning and the at night everything hurts more with fibro.u need to ask your dr about meds to help with the pain and the depression this illness brings,it will take u a long time to get used to feel all these new and yucky thing,never put everything down to fibro and always ask your dr if something new pops up your worried about ,but if u read a lot of the post in here u will find most ppl have the same as u .i myself was saying only the other day how I can't spell and talk anymore.i stammer and sound drunk sometimes.i shake bang in to things and go from hot to cold in minutes hehe. But u do get good days and u remember that.take your time and remember just because one person has let say they can't walk that does not mean it will happen to you.i have 4kiddies and I keep going the best I can .pls ask anything u want no one here ever gets fed up of helping others hugxxxxx
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Re: New here and newly diagnosed, I have a question

Postby Monty99 » Wed Mar 05, 2014 1:44 pm

For me the diagnosis was like being hit in the head with a spade….so just take baby steps. You will feel slightly better as time goes on but you must be prepared to make adjustments to your life that you sit happily with you. The lack of sleep should be one of the first things to address, because if you have had a good nights sleep the pain is easier to deal with. Get your GP to provide you with some medication that will knock you out at night. I currently take 100mg of Doxepin at night together with a slow release pain killer. I was having trouble with the pains, especially in my wrists and hands which I think is relatively common. Whilst the slow release pain killer doesn't take all the pain away, it has eased it a little. I also wear gloves to bed to keep my hands warm and less likely to swell. Go try that and see if it helps. Most of all don't think you are on your own, we are all hear to help you. My Occ Health department told me over two years ago that I would see light at the end of the tunnel and control my pain, but it would take time. It is true, 2/3 years ago I thought I would never have made it this far but with the right guidance, medication and friends and family that has made it all possible. I now work 60% less hours, closer to home, have regular sleeps and gently exercise. All these things combined have made my life worth living. Just don't give up but give into the pain when you need to and don't feel guilty about it. FMS is slowly being recognised by many people and unfortunately it is affecting just as many people, it is silent and sometimes can be misunderstood. Good luck
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Re: New here and newly diagnosed, I have a question

Postby babymable » Thu Mar 06, 2014 2:36 am

Thank you everyone for your replies. It's just very hard as I don't think my doctor actually believes me even tho she diagnosed me with it. Long story short I have had sleep problems and restless leg since I was 11, was diagnosed with depression 7 years ago, diagnosed with bulging disks in my back and IBS in November. Then this month migraines and Fibro. At my last appointment with my doctor I was telling her about the pains in my side I was getting how it was tender and sore to touch and it was then she finally brought up Fibro, then she proceeded to say that there was nothing they could give me other then pain killers and then went on to say that she has never met anyone my age that has so much wrong with them. That made me kinda think that she thought I was lying about my symptoms. That made me upset and I started crying and told her that I am not a hypochondriac and that I am actually feeling these things and I am getting more depressed with it. All she did was write me a prescription for migraines. I am already on Butrans patches 20g because of the bulging disks but that does nothing for the pain.

I am going to have to contact the pain clinic again to see what else they can offer. But my doctor didn't advise anything for the Fibro at all and infact wasn't even going to send me to a rheumatologist, I insisted that she did knowing that it would help me with my case with ESA who are currently trying to get me to go back to work. It's so frustrating that they can see you for half an hour and automatically can force you back to work when the don't see how you struggle the rest of the day.

I'm just waiting for my decision and I already know what it's going to be put I will be prepared to appeal it, I am at the point where I have been on ESA the last year and I will be trying to apply for DLA but if they aren't even willing to give me ESA I know I am going to struggle with DLA. I don't think they understand how much pressure they put people under and how their actions and words can make you feel 100 times worse.
Last edited by FluppyPuffy on Fri Mar 07, 2014 10:32 pm, edited 1 time in total.
Reason: Split paragraph into smaller ones for easier reading.
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Re: New here and newly diagnosed, I have a question

Postby babymable » Fri Mar 07, 2014 7:17 pm

Today my right arm turned cold, lost feeling and turned purple with white dots. Is this common with fibro. Ive only just been diagnosed so still trying to research more about it. I dont want to automatically assume every pain and symptom is fibro related when it could be something else.
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Re: New here and newly diagnosed, I have a question

Postby FluppyPuffy » Fri Mar 07, 2014 10:38 pm

Whilst lost of feeling, and areas feeling cold can be related to FM, they can also be signs of a number of other problems that are completely unrelated to FM. When someone experiences something new, worsening, or just giving general cause for concern, it is always wise to have it checked out by your GP, just to be sure.
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Re: New here and newly diagnosed, I have a question

Postby babymable » Sat Mar 08, 2014 12:06 am

Thanks maybe I will make a appointment with my GP, I feel like she thinks I am a hypochondriac so now I am wary or bringing up anything new to her. Maybe I will book a appointment to speak to her and make sure she believes me, I need a doctor that backs me up and tried to help rather then one that thinks I am lying :(
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Re: New here and newly diagnosed, I have a question

Postby Butterfly8588 » Sun Mar 09, 2014 12:18 am

oh babymable I feel for you. I have a lot of experience with esa claims, not for me but other family. Please bare in mind when answering the questions that they arent just asking if you can do these things once but as many times as you like, safely and in a reasonable amount of time. Also dont just take the questions at face value, add extra things you cant do even if it doesn't seem relevant. you cant give to much info in my opinion.
I hope you get the right result.

take care xxx
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Re: New here and newly diagnosed, I have a question

Postby Lizzyear » Sun Mar 09, 2014 1:36 am

Hi,
Poor you, you sound like you are having a rough time at the moment. I think it does feel like everything comes at once when first disgnosed :yikes: but if you find you are struggling with your GP is there not another doctor you could see at your practice, that might be a hit more understanding of you fibro etc? This condition is hard enough to cope with, without feeling you have the support of your GP.
I also find winter definitely is the worst time for my fibro. I applied for PIP, and although the lady from Capita seemed very nice, the stress set off a major flare. That was a month ago, and I'm still struggling! But hey Spring is round the corner and the anticipation of summer sun and heat!! :-D
I do hope you manage to find support. It's great your partner and mum are there for you too!
Hopefully you will find comfort, information, advice, experience and friendship here. Its a great site and sometimes nothing beats talking to someone who has the same condition.
Gentle and positive hugs to you, and you will get used to this darn fibro, and take comfort from the good days to see you through the bad.
X
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Re: New here and newly diagnosed, I have a question

Postby babymable » Sun Mar 09, 2014 5:48 pm

Thanks so much, I have requested to be able to view my medical records s I can get copies and show ESA that I have been experiencing the symptoms for the last few years and didn't just make them up so hopefully that will back my claim up. To view my records apparently my doctor sits in the appointment with me and goes through them so while I am there I am just going to flat out ask her if she believes me or not as there is no point in me continuing to see her if she doesn't. It's just very weird/hard for me because I have had the symptoms for so long but it just seems the last 2 months it has hit full blown. Is that normal, I hear people talk about flare ups but they come and go right I have never been this bad before in my life.
I am falling asleep while sitting on a sofa, while talking to m partner, I have even fell asleep typing with my laptop in my lap. And the pains just seem to be so much more worse the last 2 months. A part of me sees where the medical assessor is coming from because my last medical with them was 3 and a half months ago so yes it does probably look to him that it happened all recently as he just seen me again 2 weeks ago. Even during that appointment I was yawning and falling asleep, he did ask me if that was normal and I did say I a tired all the day but never this bad. At one point I had tears streaming down my face because it was just constant yawning. I couldn't offer very much help during that interview because I felt out of it and like a zombie so I probably didn't help myself because I was too out of it to say what I wanted to lol. Oh well we shall see what the outcome is and even though I am pretty sure they will be keeping me in work category but if that does happen I will be appealing. Just makes you think if they are like this with my ESA claim I am going to be totally screwed with my DLA claim lol
But thank you so much for everyone for your kind words. It is so nice to have somewhere you can go to get hings off your chest and be able to hear from people that are going through the same thing.
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Re: New here and newly diagnosed, I have a question

Postby Butterfly8588 » Sun Mar 09, 2014 8:00 pm

it could be relief at finally knowing what's wrong with you as well. I spent several years fighting the medical world to get them to listen and when you have your diagnosis you dont have the anger and a reason to drive on anymore and you can get overwhelmed. also being told you have fibro isnt the most uplifting thing in the world, your emotions and your physical symptoms are very closely linked as I'm sure you've found out.
I hope you feel better soon hun xxx
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