Hi i am 27 and i have Ankylosing spondylitis with secondary fibromyalgia.I was referred to this community by some one in the fibromyalgia support community.I have been in pain for 5 years+ only got diagnosed officially this year.I have tried sticking a hot water bottle under my bad hip and it seems to help but im all out of ideas.Im on plaquenil and waiting on an mri to confirm the AS diagnosis and see how bad it is.I also am waiting on a scan of my hands and feet.I take lyrica and palexia for the pain but they dont really help.I have a heating pad i lie/sit on which helps.I have difficulty walking as the stiffness and soreness has gotten worse over the past 6/7 months..
Hi there, Queenpink! I was going to suggest that you introduce yourself, but I see you’ve already done that. Although AS isn’t PsA, a lot of what applies to one applies to the other. I hope that you will find this a good place for support, informamtion and understanding.
Thank you for welcoming me.I am looking for some support as i am quite depressed because of the pain.Im told to exercise but i get too tired to go anywhere never mind exercise.
Oh yes. My doc used to tell me that I needed to lose weight and exercise more. (All true, by the way, and I never denied that.) But when mustering the energy up to get out of bed is hard to do …
Depression is often a symptom of these chronic inflammatory diseases, not merely a reaction to the pain and frustration. When I found the right treatment (with the help of fabulous docs), my depression was the first thing that improved.
Hang in there, Queenpink, and hang out here!
Thank you for the reply.I never have any energy to do anything.Its true i need to lose weight and exercise more but it just makes me worse energy and pain wise that is.
I agree with you i think if i get the right treatment my depression will improve.I am going to be on practically all dsay as im on disability and i havent figured out what to do with my time.
Hello there. I was diagnosed with psoriatic arthritis in 2013. I continue to have an increase in pain and haven’t found any dmards/biologics that have worked yet. I spend every moment in pain. Pain meds, heating pad, Tens unit, and braces/wraps have helped, but the pain is still pretty bad. The rheumy found PsA in both SI joints with joint damage. 2 months ago I was diagnosed with ankylosing spondylitis. My doc said AS is a more severe form and I can’t have both AS and PsA (I don’t remember why doc said that). Doc said it’s much easier to get insurance coverage for Remicade with AS diagnosis. I started Remicade about 3 months ago. I have PsA in both hands, feet, Achilles tendon, elbow, knee, and spine. I guess I have it just about everywhere, lol. I also have early onset osteoarthritis in the lower half of my spine due to Ehlers-Danlos Syndrome. I know what you mean about pain. I’ve been dealing with pain for 19 years. It wasn’t too bad at first and I could take ibuprofen back then. But I think I took all of those over the counter meds too long and developed allergies to them. Now I take tramadol and codeine. I hope you find treatment that works. As soon as it starts to work for me, I’m going to take my dog for a walk and lose the 20 or 30 lbs I’ve put on from taking steroids.
Hello there Queenpink.
I'm in the UK too, there are loads of us Brits here. That can come in handy for things like sharing experiences of how to get the best from the NHS and so on.
The exercise thing is a difficult one. I think as long as I can actually move at all I'll probably do some form of exercise. There was a time I didn't, when pain and fatigue had hit me like a steam train and I didn't know what to think or what to do for the best. But since then I've got back to various forms of exercise and you could say I'm a believer. Believing it'll help is key but it doesn't deliver straight away so in fact you do get negative feedback at first ... you feel worse, not better, more exhausted rather than less so.
So apologies if you've tried what I'm about to suggest. I don't have fibro, I don't have AS, I don't exactly know how it is for you. But anyway .... how about doing some form of movement that might seem pretty pointless such as walking just a short distance but at the same time every day for, say, 3 weeks. You probably have to walk to the shop etc. but what I'm thinking of is regular exercise for its own sake. Then stop doing that ... if you then feel like 'where's my walk??' you're there, you're hooked, your body's acknowledging that actually it liked the walking. If you get that 'Aha!' moment you can take it from there with that inner knowledge.
I think sometimes, with these weird diseases we've got, we have to play the body at its own game and test it out, we can't necessarily trust some of the messages it gives us.
It's good to meet you!
Thank you for telling me your stories about your psa and other types of arthritis.i would go out for a walk but i have 5 fights of stairs to climb up to my flat and i find it very diffcult to climb stairs dont know why but my knees get really painful and i get out of breath.I have a heart issue and asthma as well as stomach issues.
I saw my dr today who prescribed anti-inflammatories which helped when i took it earlier and i have a sinus infection and a throat infection and a lower lung infection so those infections could be the reason why i am so tired.I am on a throat spray antibiotic and a tablet form antibiotic.I dont know about people here but i am constantly sick with some sort of chest infection or sinus infection.
You've got a lot to contend with Queenpink. I hope you can get on top of those infections soon, no wonder you're feeling so low.
It strikes me that with several health conditions you need and deserve a bit of help to build strength. Do you think that, when you're over the infections, your doctor or consultant might be able to refer you to physio or hydrotherapy or something similar so you could exercise safely, with guidance?
Queenpink said:
Thank you for telling me your stories about your psa and other types of arthritis.i would go out for a walk but i have 5 fights of stairs to climb up to my flat and i find it very diffcult to climb stairs dont know why but my knees get really painful and i get out of breath.I have a heart issue and asthma as well as stomach issues.
I saw my dr today who prescribed anti-inflammatories which helped when i took it earlier and i have a sinus infection and a throat infection and a lower lung infection so those infections could be the reason why i am so tired.I am on a throat spray antibiotic and a tablet form antibiotic.I dont know about people here but i am constantly sick with some sort of chest infection or sinus infection.
I have tried yoga and i was knackered and in pain and i did 6 or 8 weeks of it and found it very hard.I was supposed to do physio but i never heard from the physiotherapist i was referred to.i cant see myself in a swimsuit(too self conscious).Thanks for the suggestions though :)
Okay, I'll stop nagging! But hey, that physio should have contacted you, that's awful. You've got a lot on your plate right now, but if you think you could do with another dose of nagging at a later date .... e.g. to give you a bit of moral support to chase up that blinking physio etc., just shout.
Queenpink said:
I have tried yoga and i was knackered and in pain and i did 6 or 8 weeks of it and found it very hard.I was supposed to do physio but i never heard from the physiotherapist i was referred to.i cant see myself in a swimsuit(too self conscious).Thanks for the suggestions though :)
Hi Queenpink, one of the toughest things about living with a chronic condition is finding your way to overcoming obstacles, culturing a 'can do ~ will do' attitude, within reason. Are you getting some help for your depression? Why don't you follow up with that physio, or go back to the doctor who referred you and ask for them to refer you again. I recently had a flare in my right SI joint. At it's worst I could barely walk as I had no control over my right leg or stand as pelvis felt as if it was folding in on itself. I made it to a physio after a few days and the difference her very gentle easing made was phenomenal as did the almost imperceptible movements she gave me to use on my own.
Also ask whether there is any hydrotherapy available in your area. When you have got over your infections this would be a great way to exercise... it's gentle, not strenuous, the water supports your body and protects your joints. I'm self-conscious as well, several stone of excess weight and twice your age too. My hydro group is small, four patients one physio and a rehab therapist .... everyone has a physical problem (amputees, hypermobility, serious trauma injury, paralysis etc etc) and trust me we are all concentrating way too hard on ourselves to pay much attention to anyone else. I don't wear a swimsuit, instead I wear a tankini and a pair of swim shorts others wear sports shorts and t-shirts etc. It's not a fashion parade that's for sure ;-)
I've recently bought some knee supports (I bought own brand in Boots). They are fantastic, I can't believe how much more stable my knees feel, how much less pain I get and how they help me extend my walking distance/duration. I can't recommend them enough. And I also bought myself a pretty floral lightweight folding walking stick. I hate having to use props but hell, they have helped me reclaim some of my life.
It's tough, I've had days where I haven't wanted to get out of bed and would quite happily have asked the world to stop spinning so I could get off .... but as that isn't an option I've had to take control of the only thing I have control over and that is my own thought processes.
All it takes to get started on making changes is one baby step.
I dont mind nagging.Moral support is what i need and i will chase up the physio appt.
Would you believe it i am on the couch on my memory foam topper folded over.Oh the hydrotherapy is a good idea ill have to wait for my next rheumy appt to enquire about better treatment options.I have a red cane with white polka dots on it but i think i am a bit too proud to use it though i know i need to(i think).I walk with a heavy limp would this qualify for using a cane?Knee braces are a great idea i shall buy some.
Any ideas on how to be able to sit on a couch comfortably ? i have a heating pad and a memory foam mattress topper folded over and im sitting on all that and when the pain gets bad i cant seem to get somewhat comfy on the couch and its driving me bananas.I dont think not being able to sit on a couch is part of my fibro.
Soft ice packs alternated with the heating pad. :-)
We do a great line in the very kindest nagging here :-)
Your cane sounds groovy, I was actually wondering whether you could get one in pink to match your hair? If you wanted it to be less 'cane' like check out hiking sticks instead, they come with different types of hand grips too.
The thing I've learnt about canes is that it is essential to be shown by a physio how to use it properly and to your best advantage. You may actually find the greatest support comes from using two canes together. Check out my discussion here ..... this would not have been possible without two canes.
Hydro is just physio in water so whoever you get to see first should be able to help with what is available to you locally. I pay privately for my hydro sessions because I've been going for a long time now but for new patients they can have six free sessions on the NHS. There aren't many hospital physio departments that have hydro pools but private physio practices often hire suitable pools (mine is at an independent school and the physio practice hire it for the whole Friday afternoon).
As for sitting on couches .... not good for me, not good at all. I have a swivel recliner and footstool, though, which is just perfect. Firmer and supportive all the way for me.
Yay! While you're chasing up the physio, you could ask about occupational therapy - you know, the people who show you how to do everyday things in the best possible way when you have a disability or impairment. I've heard people in the UK (this was on an RA site but same difference) say that they've had an occupational therapist come to their house to assess their need for gadgets and teach them how to do tasks etc. more easily.
I think that anyone who has fibro and AS, let alone the other health conditions you have, is going to be on this steep learning curve ..... just re-learning how to do things that sound so simple .... like sitting on a sofa. Cane sounds funky, use it if you need it, you're the one in charge.
I suppose I understand people's (usually women's) anxiety about flashing the flesh, but I'm older and saggier than either of you I'm sure plus I have some lovely things such as varicose veins, but when I get into my cozzie I think I look fantastic!
Queenpink said:
I dont mind nagging.Moral support is what i need and i will chase up the physio appt.
Would you believe it i am on the couch on my memory foam topper folded over.Oh the hydrotherapy is a good idea ill have to wait for my next rheumy appt to enquire about better treatment options.I have a red cane with white polka dots on it but i think i am a bit too proud to use it though i know i need to(i think).I walk with a heavy limp would this qualify for using a cane?Knee braces are a great idea i shall buy some.
Any ideas on how to be able to sit on a couch comfortably ? i have a heating pad and a memory foam mattress topper folded over and im sitting on all that and when the pain gets bad i cant seem to get somewhat comfy on the couch and its driving me bananas.I dont think not being able to sit on a couch is part of my fibro.
I would love a pink cane to match my hair! great idea!Ideally id like a recliner too it sounds wonderful :) An occupational therapist sounds like a great idea ill see if i can get one.I wouldnt be able to pay for hydrotherapy privately. I am in ireland not the UK so our medical system is different i dont think i could get free sessions with my medical card.Good point regarding having to relearn everything.I am going to take that on board and start to relearn stuff.Im going to be less proud and use a cane from now on when i need to.
Great stuff Queenpink!
You might have to keep knocking on doors before they open, everyone with these kinds of diseases needs a crash course in persistence I reckon. But persistence does seem to pay off time and again.
I'm wondering whether you could get a recliner from somewhere. I bet there are people who have one just while they're recovering from surgery for instance, and would love to see it go to a young person who needs it once it's surplus to requirements. And sometimes there are charities etc. that source such things. I'm going to do a bit of digging, being a nosey type.
Saw a luminous pink cane in the market yesterday and thought of you!
Queenpink said:
I would love a pink cane to match my hair! great idea!Ideally id like a recliner too it sounds wonderful :) An occupational therapist sounds like a great idea ill see if i can get one.I wouldnt be able to pay for hydrotherapy privately. I am in ireland not the UK so our medical system is different i dont think i could get free sessions with my medical card.Good point regarding having to relearn everything.I am going to take that on board and start to relearn stuff.Im going to be less proud and use a cane from now on when i need to.
Thats a great idea sybil ill look around for a recliner that is nice and comfy and is cheap.oooo a luminous pink cane...right up my ally heh :Di keep forgetting to use my cane and bring it with me when going places will have to put a reminder on my phone.