Newly diagnosed with Fibromyalgia

Posted , 52 users are following.

Hey, very new to this site so not sure how it all works yet. I'm 23 and I was diagnosed with Fibromyalgia last week after Rheumatologist ruled out all other diseases. Not going to lie, I'm finding it quite tough - especially as I have a small child to look after too. My symptoms are mainly just joint related ie, very stiff in the morning all over my body (walking like I have wooden legs), very clicky joints (almost as if they part-dislocate sometimes, especially my elbows) and I also get tired really easily. My main problem at the minute though are my very sore feet. My job involves me being on my feet up to 9hrs somedays and it's agony! (My Rheumatologist suggested I may need a career change) BUT I really don't want to leave if I don't have to. The pain in my feet (heel and ankle pain especially) often makes me feel sick it hurts so bad. Even co-codamols don't touch it. Anyone else with the same/similar problem with their feet? Will it go, like all the other symptoms that seem to 'move' around my body.  I'm on 10mg of some anti-depressant (can't remember the name, begins with an 'A') at night. 

Thanks

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  • Posted

    Hi, I was diagnosed early last year with fibro went to docs and pain clinic at hospital. Been told I have also anxiety disorder called GAD and I have recently been told i have depression. I am 32sadI have worked  since 16 in retail and i loved it but over the past 10 years i have been riddled with pain,low mood swings and upset and sleep dreadful. I was put on tramodol,amitriptyline and naproxen which i was on for over a year but tamodol was making me sick and dizzy so i changed to co codomal they dont seem to touch me some days with the pain. I have pain allover mainly my back,knees and hands. My hands swell up badly when i use them and now my knees have started doing the same.I cant even do simple things like wash my hair sometimes as pain really bad.My knees look like balloons at the minute. I find that somedays i dont know what to do. I find a hot bath eases it sometimes i have to have a hot water bottle everyday on my back and i use deep heat spray but now im desperate to help relieve this pain. I was told by hospital to exercise but sometimes i cant even walk properly.
    • Posted

      Hi Melissa, sorry it's take me ages to reply! Too busy running around after my newborn :-) I hope your symptoms have eased up bit for you now. I too suffered badly with my fingers, knees and feet. I So bad infact I could no longer get in/out of the bath, down onto the floor etc. Like you I struggled to wash my hair, do buttons, open shampoo bottles (I almost dont believe myself now as I'm writing this). All my symptoms went when I got pregnant and fingers crossed, up to now (4 weeks after baby) I only have a few aches. I had physio and the finger excercises she gave me really helped. She also said I was knock kneed and had flat feet - no idea if thats fibro related - but I didnt have them before and I don't have them now! Bizzare. For the pain I used to take co-codomals and rest as much as I could. The medication I used to take for Fibro was Amitriptyline - and that worked well for me. Hope you're feeling better xx
    • Posted

      I would suggest adding epsom salts to your baths, 2 cups. And try to stretch out the parts where it hurts while you get some rest. It's still exercise but it's very light and I think your body will tell you what it wants.

      Good luck and good health smile

  • Posted

    Hello i am new to this site to. I am 50 this month. Can someone tell me more about fibro.  I was diagnosed with fibro  1 weeks ago.  I havent a clue about fibro. My doctor just gave me gebapantin. Dont like them. I dont understand fibro. I feel ok today but didnt get much sleep, My legs were bad due to pain and restless legs. Some days I am really in pain and can hardly walk due to stiffness all over and especially in my hips, stiffness all over and as you say albo90 (almost as if they part-dislocate) especially my lower limbs below the knee. my feet are so sore. What I dont understand is that when i read about fibromyalgia some people have symptoms I dont have, and sounds so bad for them and I wonder if I have been misdiagnosed even though I am always in pain somewhere due to stiffness and shooting pains in legs especially of a night. Do fibro sufferers have flare ups. i.e does it come and go. as I said I feel quite ok today obviously still pain but not anywhere near the pain I was in a few days ago? I havent been referred to a rheumologist or physio? What can my doctor do for me? My family and friends dont understand the pain i am in. They think "oh its just a bit of arthritis" so annoying! Thats what people actually think that when you tell them you have fibromyalgia they do actually think arthritis!  God if only a bit of arthritis!  Any suggestions for medication thats currently working for someone would be of great help. Thanks.
    • Posted

      I just posted to alb90. Please read it. I know it is very frustrating because people who don't have fibro do not understand it. The doctors don't even understand it. Yes, I get flare ups. If you try any of the things I posted please let me know if they helped. The magnesium malate was life changing for me. I am in pain every day. It will never go away completely but when it is not bad I consider that a great day and don't even think about it. I do have bad days and I take ibuprofren on those days. For sleeping, I added a pad to my already good mattress. You don't want firm, soft. You can google that too. Mine was only about 90 bucks and it helped me a lot. Hope some of this helps you.
    • Posted

      Hi Julia, sorry it's taken me ages to reply! I often used to wonder if I was misdiagnosed too as my symptoms - although they were bad, seemed nothing compared to what others reported. I used to find my symptoms got worse if I was working more (I worked long hours in a cafe). I beleive the only person who can diagnose Fibro is a Rheumatologist?? Not 100% though. It was him who referred me for physio. The medication that worked for me was Amitripyline - taken at night to help you get a good night sleep to ease symptoms. People don't understand at all, I felt so alone. My 4 year old was the one who understood the most. Mummy had 'Silly legs' and 'silly hands'. She helped me so much. Hope that helps xx
    • Posted

      I was just diagnosed as well, but I think I have had it for 40yrs.  I am actually from Canada, so not sure if the drug names are the same.  My dr. told me that they now believe fibromyalgia is a central nerve disease. Your signals to your brain as to the pain are out of whack so to speak. Anyway, she put me on cymbalta which is an antidepressent for fibromyalgia, diabetic nerve pain, and other nerve pain.  It has settled down the pain, the ibs, the bladder, so has helped to a point.  My problem is mostly the fatigue and dragging myself around. lol  If I do too much in a day when I am feeling well, I am sore all over for a few days after.  So now I am learning to take frequent rests....just sitting for awhile, although I hate getting up, because I get stiff sitting. I heard fibromyalgia people have low vitamin d. So i started taking vitamin d3 which is supposed to be better, and magnesium. It seems as if everyone has different degrees of pain.    Deep tissue massage is a lifesaver for me.  Epsom baths and hot showers too.  Water exercises in a heated pool if there is one close by.  It gets to be a job staying well, and somedays seems like that is all I do, but trying to get a better routine so I can enjoy my day.  Hope I have given you some ideas that will help you.  
  • Posted

    I am new to this website so my reply is late. I am 58 and was diagnosed at 40 after suffering for years without knowing what it was. I have refused to take drugs and prefer holistic treatment while I am able to. I totally understand that pain levels, frequency, duration and tolerance varies greatly from one person to the next. I too have bad spells usually in extreme weather, hot or cold. Deep cold is bad, this past winter I had a very long bad period. Using a heating pad helped and do keep your body as warm as you can.  I also know that what may work for one person does not work for another. Here is what I have found that does help me out. The "melt method", gentle exercise on a roller and pressure balls for hands and feet. Walking, I got a puppy and forced myself to walk her a lot and now I am up to about 2-3 miles a day. I take magnesium malate and this seemed to make a lot of difference. I also do stretching exercises for sciatica that help the fibro too. My muscles get super tight and it can cause pain in my feet and knees if my calf muscles are too tight. Just sit on the floor with your legs out in front of you and lean forward. Other exercises I found by using google and you tube. Just look for excercise for fibromyalgia or sciatica. There are tons. Attitude is everything. My mom is 89 and has arthitis throughout her body. She taught me not to dwell on the pain and the bad days. Get up, take a shower and get dressed every day and get moving. That is still her motto. I appreciate forums like this one so that we can all share what may work for each other. Thanks for starting this conversation over a year ago.
    • Posted

      Hi Jill :-) Thankyou for sharing. I deffo agree attitude is everything. I was actually relieved that I was diagnosed with Fibro, as I was certain I had Rheumatoid Arthritis. I'm a very positive person so I think that helps too. I currently have no symptoms at all apart from the odd ache here and there since being pregnant/having my baby. I will give the exercises a try. I've been looking at things to help strengthen my joints while I can. (Before it got so bad that I couldnt walk as I felt sick with the pain, they burnt sooo bad). My knees also seized up so I couldnt get down onto the floor. I was literally an 80 year old in a 24 year olds body. I still do my physio exercises for my fingers to this day as I never ever want to experience that stiffness/swelling ever again. They got so painful and stiff that in the night I couldnt even pull my duvet back over me. It all seems a million years ago now, as I have been symptom free for nearly a year. I'm hoping for a few more years to come too xx
    • Posted

      Glad you are doing so well! I do think the melt method would be great for you. I read a lot about it and attended a class before i purchased the balls and the roller. The creator of the melt method believes chronic pain comes from the connective tissue. That is exactly what fibromyalgia is. FYI, I tried aerobic excercise and could barely move the next day and cried trying to get out of bed. Never did it again. Also, stretch the leg muscles. I was having so much pain in my knee I couldn't even walk very far. She said those muscles in your thighs are so tight it is pullilng at all the muscles attached to them and causing pain. 3 days of stretching them and no more knee pain. I will check this discussion every couple of weeks. It is so great to have others support you who understand. Thanks again and I hope you continue to do well. Congrats on the baby! God's greatest gift!

       

  • Posted

    Hi I have fibromyalgia myself and it seems to be getting worst day by day for me. I hurt all the time unless I have taken my pain meds, so I know exactly how you feel. I am concerned about you saying your feet have been bothering you. Have you ever been checked for Neuropathy? I would see a neurologist because the soreness in your feet could be the starting of Neuropathy in your feet.my friend has had it for years and she says there's goof days and bad days but a majority of the time her feet hurt her so bad she can't even walk and she gets burning feeling in them. She said the pain feels like if someone tied a rubber band around them as tight as they could get it. Im not saying that's what is wrong with your feet but I've had fibro since 2008 and never had my feet hurt me in anyway, just the rest of my body feels like I was hit by a semi truck or beaten to death with a hammer. Thank god for pain meds! Even tho I hate taking them ya know. But I sure hope you get feeling better it sure can be a struggle at times but try to hang in there as best as you can.

    • Posted

      Hi Amanda! I've never been checked for Neuropathy. I had a quick google and I dont match many of the symptoms. I had a baby 6 months ago and was all symptoms went whilst pregnant and came back very mild about 6 weeks after birth. At the moment I manage on just 2 paracetamols before bed. I feel great. I hope you're feeling better today x
  • Posted

    hi wow reading your story I can really relate too firstly my joints especially my hips click a lot I too only got dignosed last week after 2years of test and being past around I suffer with widespread pain but mainly my arms and legs I too walk funny with a limp as my knees r so spare and I get stabbing pains in the tops of my legs lucky I only work 7.5 hours a week doing lunch time job in a primary school I get some pains in my feet mainly shooting sharp pains iv been on lots of tablets and haven't found any that work for me as yet hope this helps so u know u r not alone smile
    • Posted

      Hi Sara! I have found my symptoms are do much better since I stopped working. I dont take any meds other than 2 paracetamols before I go to bed. I find this helps me sleep better (even if it is psychological, it works for me lol) I'm lucky enough to be a stay at home mum and other than stiff hands in the morning and getting down/up off the floor like a 90 year old, I'm good! When I wrote this post I couldn't even hold a spoon to eat my cereal! Xx
    • Posted

      I sleep too much haha but never feel refreshed I get tired very quick I find it hard todo some of the house work lucky I have a good husband to help I seem to get stiff when ever I sit down I find it hard to get up out of a chair it's been affecting my memory lately this is a new symptom for me bit scary also glad u r feeling better I had a good few weeks but now the cold damp weather has hit me quite bad x
    • Posted

      I am new here and I guess I replied to alb90 (sorry alb90) instead of you. So If you look at my reply to alb90 you will see what I wrote to you.  I think we will both find a lot of helpful advice here.smile

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