New to Diagnosis

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Hi I am recently new to the diagnosis of Fibromyalgia but not new to the pain. Mini rant, I have suffered through a lot in the last two years through horrible migraines and neck pain which progressed into sleeping problems, memory problems, muscle spasms in every part of my body, joint tenderness, a worsening of my anxiety and depression that I have had all of my life, and stomach issues. It took a while to find the right doctor to help me but my current neurologist is the one that diagnosed me last month. I am looking for any kind of help. I am stressing and having such a difficult time. I am the breadwinner of the family and I work a lot. I feel like my work life and home life are suffering greatly from my disease. I am able to sit frequently at work, however, with the memory problems and migraines my work isn't as involved and productive. I am also not able to keep up with my two kids and the housework like I need to. I vacuumed one room today and my lower back was in so much pain it brought tears to my eyes. Sorry I am making this so long I have always been a talkative person, lol. And I am hoping to meet some people going through the same thing as I have no one that fully understands what I am going through. No one in my family has ever had this disease so I am learning everything that I can from the internet and doctors. Thanks in advance for any replies and I hope everyone has a blessed day!

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12 Replies

  • Posted

    It is a horrible disease I have had it for 2 years the pain can be so bad I try not to let it get to me. So I do stuff then I realise it pain after is awful my hands and fingers go numb and can't bend them my knees and hips are today in agony so won't be able to do nothing today. I hope you get the help off your family and friends because has the months go on your will need support this group has helped has they know how bad and lonely it can be. Always here for you x

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  • Posted

    Hi knives88,

    Fibromyalgia! It's awful!! Bless you, you're going through it.

    Have you been given anything for the pain???

    Brain fog is a nightmare too I have to write everything down and set alarms on my phone!! Can't concentrate and find myself zoning out if people are speaking to me which is rather embarrassing 🙂.

    Good luck to you and hope your symptoms start to ease off a bit.

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  • Posted

    Hey Catherine,

    Yes I take Depakote for daily migraine prevention and Tizanidine for a muscle relaxer. I am also on Cymbalta for anxiety and FM and take Buspar as well for anxiety. I feel you on the brain fog I have so many alarms and notes in my phone as well lol.

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  • Posted

    Hi Knives88, just wondering if you've spoken to anyone about the pain etc not being kept under control with the meds you're already taking??

    I am on tramadol and amitriptyline and also need to go back to Gp to discuss better pain relief as they aren't working either!!

    I am cautious about the tramadol as know it's addictive so only tend to take full dose of absolutely have to which has become everyday now!!😱.

    I sympathize with you totally and glad this forum has been set up so you know others are suffering with the same symptoms and you're not going totally mad!!!! 😰.

    Catherine😊 x

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    • Posted

      Meds do not work for all, I have has FM for over 15 years and nothing has worked outside of the harder pain meds which I wont take because I cant live my life asleep. Ive tried everything, even nabilone.. I actually got a pain Dr to give it a try and medicaid paid 3600 for it. I wish it worked but also it didnt. I am disabled and on SSI, would have had full disability except my previous doctors didnt keep enough notes and the social security paid Dr did but it was outside the timeline for full disability. 

      On topic, for the OP. Try things, do what works, but you may be unable to work. I have a lot of issues now with brain fog and general fatigue/anxiety from dealing with things I have to focus on. Example: filling out paperwork kills me. I actually have to take breaks every few pages if I have to fill out a lot. Good luck to you and know that so many of us have been there and you can lean on us.

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  • Posted

    Hi hope your well I understand your pain and the mental side of things and your not alone it's all real as I suffer the same I am a single dad and I have to clean a room each day what helps me is when I get pains I use a hot water bottle on the area which helps a lot and allows me to do that bit more

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  • Posted

    Hi knives88 

    Yes everything that you described is what I deal with every day 27/7 . You are not alone . Everyone on this site knows what you are going through. Now you are still with young children versus mine are grown and I’m on disability for mine so I can’t offer much help when it comes to how  to juggle things. But know that as I always pray for everyone on this site that now you’ll be included to. Big 🤗 Hugs I send to you!

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  • Posted

    Thank you all so much it means a lot to me to have people to talk to about this. I have talked to my doctors about the pain management not working well and they are wanting me to try these a little longer. Denise, how hard was it for you to get disability for your FM? I have been only making it through working through sheer mental will power because I am the only one working right now and I can't afford to not work.

    Shaun thank you for that advice I am going to try to take things one room at a time and use the hot water bottles as suggested I know that a hot bath with epsom salt has helped me quite a bit when I am having on of my really bad days.

    My husband has also talked about me going to see a massage therapist. Have any of you found that it helps at all?

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    • Posted

      Massages are very short term not worth the coat as it's not actual muscle damage as we all know a slight pain can be so so so painful it's pointless as I have had many and no different unless u can afford one every hour

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    • Posted

      Hi knives88

      It wasn’t so much hard as it was a long process I had to hire a lawyer who specializes with fibromyalgia had to get two Drs on board with it then I had to wait, wait, wait! Social security takes FOREVER omg 😮 for me 2yrs. Some people get it sooner . My lawyer said it the luck of the draw. In the meantime I had to rely on my father and son to financially help me until it got approved. They want draw it out to if you become impatient and go back to work but there was no way I could go back. I worked as long as I could then my dr said “I think it’s time to apply for disability “ I was miserable. I hope things come together for you. 

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    • Posted

      Medicaid pays for massage therapy if it is done through a hospital PT office but I dont think it works for FM. In fact I think it was worse for my FM symptoms. It took me many years to get my SSI for FM and the best advice I can offer is make sure you doctor keeps THOROUGH notes explaining how much you can lift, walk, strength.. EVERYTHING. If you have to make an appointment and explain you need all that. I wish I had known, if I had I might have gotten my full disability.
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  • Posted

    They want to draw it out to see if you go back to work. Typo error 
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