Good morning fibromyalgia friends

Good morning fibromyalgia friends

I know I can post this and get the understanding I can't get from my friends or Drs. I have had a really bad flare up they have told me, but I must try to be more positive and work through the pain? I have tried everything to try and convince myself I don't feel so tired or in constant pain but nothing is getting me through it ?

I have been having problems with my legs and waking for months now. My right leg started dragging and I kept falling over? The pain clinic at Northampton General hospital told me that the MRI was clear so it is not a trapped nerve. They offered me an infusion which is given at the Dentist for removal of teeth. This was a total disaster and for two days after I lost all use of my arms and legs which they said is not linked to that treatment, my dr said that he had heard of this side effect and it would wear off.

I am now on two walking sticks due to the weakness in my right leg and now having problems with my left leg giving way. My Dr said it is connected to the fibromyalgia and there is nothing he can do to treat it. But how do I get better with such a limited mobility? My husband is a star and does everything in the house and has for the last 7 years.

We only got married 6 years ago and things have got so bad I feel he must be feeling the strain and working full time he now has high blood pressure.

I am not complaining and know there are people with so many illnesses worse than mine but often feel so lonely with this illness as so many people think it is MADE UP and in the mind?

Just wondered if anyone else feels like this or has any ideas on what I can do to help my situation.

Thank you so much for reading my post and I hope your all coping better than me at the moment.

This is a picture of my two dogs Alfie is the black one and toffee the puppy

16 Replies

  • dont worry you are not just as bad as you.ive resorted to walking with a frame now.i was so crippled with it legs going etc..numbness...its now gone to my arms..but i found i put so much weight on being non active when i got my wheels i started walking..small distances first then further.i now walk with the doctors surgery.ive lost nearly 2 stone.just by walking and swimming.mind you ive not been swimming for nearly 4 weeks now i think.not had the your doggies.please hold in there we are here if you want to talk.hugs to you have a wonderful day xx :)

  • Thank you so much for replying so fast. It seems Drs still don't always believe we have this condition that's what upsets me the most. Physio have measured me for sticks and said they can't help me anymore. Just have to keep trying x

  • you might find after a while that the sticks might give you soreness in the palms with the fibro..use some wadding hugs xx :)

  • Good morning water bottle, I am them same, losing my legs despite making myself walk, my right leg is very painful and gives way, same reply from my GP, just your fibro! It's very frustrating, I am struggling to sort myself out I have had fibromyalgia for more than 16 years I am weary now. I have decided instead of battling to get out I took up art and do sewing it takes my mind off it for a while, although after yet another bad night I am shattered today. Keep your chin up, hope you have a better day.

  • I have taken up knitting crocheting and Swedish weave sewing some pictures I could post if you would like to see them. They all help but once again I am sitting down all the time my bum is getting bigger lol

  • hi waterbottle so sorry i do understand the pain of fibro when i have a bad day i have a bath this seems to help the pain then i go to bed and just rest i put on my electric blankit heat helps .fibro makes you fel exhausted both mentally and physcially then you get the fibro fog memory loss being possative does help .i 2 have terrable pain walking but i have perifual neuropathy that is severe nerve damage to my feet have you thought about getting a mobility schooter i have one and i now have my independance .dont beat yourself up we have days when you can just about cope then days you feel like crap .if you want to know about fibro google 100 symptoms of fibromyalgia .ask to se a diferant doctor and ask to se a rheumtolagist just to rule out that fibro is causing your leg problems keep strong we are here for you i love your furbabies ,sending softest hugs .

  • I am sorry you are so low at the moment but know this you will come out the other end . you may still have the pain but you will laugh again . and you will help some one who feels just like you do now . this shitty thing we all have takes so much from us . But I can say if I never had it I wouldn't of met all the fab people on here so some good things to come out of having it

  • Nice reply, same here 😃

  • This is a wonderful group to come on I feel a little better just after sharing a few of my hobbies. I live in Northampton and don't anyone else in this area who could understand our illness. Would love to meet up with other people who might like to craft or be shown how to. Would anyone think a coffee morning would be okay at my house ?

  • It might be a little hard for me to get there I live in Texas.!!! Lol

  • So sorry to read your post and that you are going through such a tough patch. This illness can be very lowering and there are so many ups and downs and sometimes the downs are very difficult to navigate through but keep on holding on there and hopefully you will start to come out of the other side.

    It is such a shame that we all don;t live nearer to one another. If you click on the inverted V next to your name on the top green bar you will see a pin and it will reveal some of the people near you. Not everyone lets that be revealed but if there are people there who post alot there might be a few that would be more than happy to meet with you and it would be lovely for you to pass on all your skills. We would love you to post pictures of some of the things you have made. Not that I am at all creative myself (well only in the garden) but I often click on the creative corner to see what other people have made as there is some talent attached to this forum.

    Keep in touch with us and let us know how you are doing.x

  • Love the puppies just had to get that out!!! I have what's called a EMS unit it sorta like a Tens unit. Where tens works with nerves. EMS works with muscles. It works the muscle for you. There are also some great stretches you can do laying down or sitting in a chair. I have a problem with waking and balance also. I hope this helps you. You are welcome to PM me if you have any questions about stretches. I have some papers I can take pictures of that shows you how to do them.

  • Hello fellow sufferer I completely understand how you feel, I walk around the house with a walker,if I go out its on my scooter or doesn't matter if there is worse people your important your pain is real ignore people who do not understand fibro. We're all here for you I know I am if you need a chat. Your husband obviously loves you a lot. It helps when your partner is there for you. I'm very lucky too I have been married 2 years next week and together for 4 years. For most of half of that my fibro got worse and worse. I felt he was cheated of the good times when I could walk and dance. Instead he has me in pain depressed most of the time. But I'm the luckiest person he loves me no matter what. That I still don't believe but I'm getting there. I could rant on and on so I'll stop. Chin up honey, your not alone xx

  • Hi there,

    I'm hoping for you that the leg thing you're having will pass, I had three months of wondering if I was needing a wheelchair because my legs felt like they just had no power in them. It was scary so I understand the feelings you are going through. It passed eventually and I still get sore tired etc. it does get lonely but I found this forum and social media good for getting advice and comfort from other members.

    Like you say, people here do understand, I hate having to explain myself all the time.

    All the best,

    Gentle hugs xx

  • I am so genuinely sorry to read that you are suffering and struggling so much and I sympathise completely. I use a tri-walker as my mobility has become so poor, I had a bad fall about 2 years ago whilst out using a walking stick and was in a wheelchair for 3 weeks and could hardly move let along walk.

    I want to sincerely wish you all the best of luck and I genuinely hope that you feel a bit better soon.

    All my hopes and dreams for you


  • Once again the support on this group is amazing so many people have this illness it is shocking really.

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