Psoratic arthritis and severe fibromyalgia

Options
I'm interested to meet other friends with either of these illnesses, I have both (diagnosed by a consultant Rheumatologist), when the diseases hit I was training towards a half marathon. I've other health conditions but these have robbed me of my ability to do even light yoga. I go into a specialist ward tomorrow and I've been told to expect intensive physio and hydro. I'd love to meet others who may need support and also learn if there's anything out there that may help.

Please reply or add me stating this post.

Take care and soft hugs

Replies

  • Sakti369
    Sakti369 Posts: 2 Member
    Options
    Hi there. I don't have either of those illnesses, but I can relate to your frustration. I was working out for two hours every morning before work. I did yoga and boxing and stretches. I loved yoga so much.

    Two and a half years ago I was crippled in a car accident. My ankle healed out of alignment and I walk with a cane now. It's painful. I gained weight and lost so much muscle and flexibility. Getting through a normal day takes so much more energy now that I find it difficult to find the motivation to move when I get home from work, let alone workout.

    Last week I went to my doctor to ask for help and she prescribed me a temporary stimulant. I'm only on day three, but I'm starting to feel a bit like my old self. The pain is still there, but I don't have to fight it through a fog of exhaustion right now, which makes motivation easier. I hope it sticks after I'm off the stimulant.

    I'm with you, my friend, and very sorry for your pain and loss.
  • mbaker566
    mbaker566 Posts: 11,233 Member
    Options
    i have behcets and fibro.
    sometimes it hurts to even wear clothes.

    i try to listen to my body but I find moving whether it sucks to move or not helps me overall
  • BigGuy47
    BigGuy47 Posts: 1,768 Member
    Options
    I was diagnosed with PA about twenty years ago. Didn't manage it well and simply lived with the pain.

    My rheumatologist recommended strength training over running. It was slow going at first, but I got stronger over time. I've been doing strength training for about four years now. My mobility has improved dramatically. Pain levels have dropped significantly. Since it's working well I will continue to strength train as long as I'm able.

    I'm over 50. I pay close attention to the aches and pains. If I push too hard and injure myself then I have to wait for the injury to heal before moving forward. I hate set backs. I try to find that line of going at it with enough intensity to get stronger, but not enough to aggravate my PA.
  • Chieflrg
    Chieflrg Posts: 9,097 Member
    Options
    I have psoriatic & rheumatoid joint disease. It can be difficult, but it can be managed after figuring out how to listen to your body. It took me a couple years partly because I can't take meds.

    I lift weights very heavy, play baseball, hockey, and can finally do yoga.

    Most people I know have flares triggered by stress. Learning to deal with the pain and hurdles can be at first.

    If you have questions, just PM me.

  • smariba
    smariba Posts: 10 Member
    Options
    I have RA, osteo and fibro. Yay me. I was diagnosed young (18) because of chronic pain and my dad has RA so it sent them in the right direction to look. Staying active is the best way to fight against the pain. It's not easy and I've had some bad years and some good ones. I've been really pushing myself lately which doesn't always end well but when I'm feeling good I try to take advantage. I try to avoid foods that cause flare ups, drink water, take supplements and just stay positive. This is the only body I have. I kind of have to love it. Even when it's being uncooperative with my life plans. :smile:
  • skinbeauty2005
    skinbeauty2005 Posts: 24 Member
    Options
    I have RA and fibro. I was also diagnosed young, at age 20. I was so severe I was told I'd be in a wheelchair by 25. I spent many years in pain and depression, went through countless meds as they all seemed to stop working after a year or so. I was doing IV infusions every 2 weeks in the oncology dept. and on the last meds even available for treatment, as I'd done everything out there.

    About 5 years ago, at age 30, I got fed up! I was taking meds for side effects of other meds, and I was miserable. I told my Rhuematologist I wanted to start working out, and taking better control of my health. He cautioned me against high impact. I needed a goal and I chose a mud run. He was very leery that I'd ever be capable of running a 5k obstacle course. It was challenging, but I did it. And since then, I've run 2 more. I got out of an unhealthy relationship. I've lowered my stress levels emmensly through yoga, weight training, and just overall exercise. I've improved mobility and as of three years ago, I've been in complete remission and off all meds. I haven't even seen my RA dr. My PCP tests my levels in anual blood work and I'm doing great.
    I honestly think that me removing so much stress in my life and finding strength both physically and emotionally has truly improved my health.

    I wish you the best. Know that these diagnosis are not the end. You can push forward and be better for it.

  • RoelTamase
    RoelTamase Posts: 1 Member
    Options
    Diagnosed with psoriasis in 2010 and in 2014 developed extreme pain in some of my joints in my hands and feet to the point I couldn't walk a few feet. My Rhumatology Doctor recommended Humira. I was hesitant on taking it but within weeks my joint pain was gone. At this point I can't function without it.

    I take regular blood tests to make sure it's not destroying my liver.
  • bhc404
    bhc404 Posts: 1 Member
    Options
    Hi,

    I've only just started on here but I have been dieting/ trying to ex3rcise for some time. I too have fibromyalgia, as well as ehlers danlos hypermobility and poly cystic ovaries. I have always had an unhealthy relationship with food having suffered from an eating disorder (which I still struggle with) apart from the terrible pain and exhaustion from fibro, which I find makes it difficult to exercise, I've whacked on weight with my medication and after an accident last year which left me in a wheel chair. Hydro really helps tho :) currently trying to force myself to swim everyday as if I don't exercise I never lose weight! Anyone with fibro or other chronic illnesses feel free to add me as a weightloss support buddy :)
  • Lissa1129
    Lissa1129 Posts: 10 Member
    Options
    Hang in there! I have Behcet's and am dealing with a messed up left leg since March. I keep pushing through and using RICE on my aching parts.
  • daniellek30
    daniellek30 Posts: 171 Member
    Options
    I also have fibromyalgia - and I totally can relate to the person that said sometimes it hurts to wear clothes. Working out has helped to ease the pain, as well as cutting out certain things (that I really shouldn't have been eating in the first place!)

    Feel free to add me!
  • TheLittleFangs
    TheLittleFangs Posts: 205 Member
    Options
    Hello everyone,

    I'd like to thank you all for sharing your stories and I hope we all add each other for support (I don't seem to be able to through the app)

    I'm very sorry for your struggles but am encouraged by those who have worked their way up to an active life.

    I spent 11 days on the unit and I'm now awaiting the new medications. I've had some hydrotherapy and I was encouraged by the way this improved some mobility even if at the moment it is only under water without gravity. I can definitely relate to the clothes hurting part, I was offered morphine on the ward one day as nothing would settle the pain but as the majority of that was from clothes and therefore pain signals pain I didn't take it.

    I'll be under the Consultant rheumatology nurse, outpatients physio and hydrotherapy twice a week indefinitely, two pain clinics (sensory and pain management) and my gratitude to the NHS is endless.

    I hope to 'meet' you all in my friends feed.

    The Head physio has said because of my attitude and willingness to work he thinks he will get me running again - he said it's a months to years rather than weeks to months goal though.

    I agree with those who have said stress can trigger flares, and this was seconded by the ward staff. You're all correct stress has a huge impact. It's something to do with the limbic system controlling our stress response. I'm still reading up on it but what I've read so far makes sense.

    Soft and gentle hugs to you all and again so sorry for delayed replies the Internet was somewhat hit and miss xxxx