Hey im new here. I’m so glad I found this site. I was looking for info online about psoriatic arthritis and fibromyalgia and what options I have as I am now unable to walk. I am fulltime mummy to 3 beautiful children one of my sons is disabled so im also a cater but at the moment my husband is caring for me as well. IV have psoriatic arthritis and fibro and M.E for years and have just gone in and our of remission but gave never been pain free. I had a massive flare last Christmas and its never gone away and keeps getting worse. I have crutches to hobble about on but they cases more pain because of my back and wrists being affected by pa. I’m on MXT but its not working. I’m on the maximum daily dose of tramidol and codeine im also on steroids daily but im still in agony. I can spend days at a time stuck in bed because I can move. If I so try and move it feels like my bones are broken and my joint lock? I don’t know what else to do. I have a really sympathetic GP and reumy but iv just been told I have to stay on MXT for another 4 months to prove that my body is not responding even though my reumy knows its not and so does my GP. When I ask to be refered to OT both docs tell me to hang tight for when I can try another medicine. I can take another 4 months house bound. Its bad enough being in this much pain with out your life passing you by. I think im just sick and tired of being sick and tired! I don’t think im being unreasonable asking for help with my mobiltiy? I just don’t want to argue with them because they really are good doctors but on the other hand they are both acting like they have failed or im giving into my condition if I use a wheelchair? Has anyone else had this problem?
That’s what we are here for! Vent away! I’m getting to the point where I need to use my wheelchair more often. At first I felt embarrassed but now my wife and I get to again go places and do things that we had stopped. The only thing I can tell you is to do anything you can to keep doing the things you enjoy. If a wheelchair can give you even a bit more freedom, go for it!
I can’t advise you on meds as every med effects everyone differently. I can tell you to get a hammock!!! Even on my worst days just laying in the hammock for a short while can relieve more pain then any meds. I know it sounds strange but every PSA sufferer I know now uses one. It takes all the pressure off your joints. I sleep in mine some nights. I’ve been hearing that zero G chairs have the same effect but haven’t tried one yet. Also if you are not on a gluten free diet yet, get on one!!! Don’t eat a single speck of anything with gluten in it and see what happens in a few weeks. Remember, not a single speck!!! It’s not hard once you get use to it but wow can it make a difference. Finally keep your stress level down!!
Glad you found us and good luck. We are here for you!!!
Marc
I also have Psoriatic Arthritis in addition to Lymphadema. I have very limited mobility. I am confined at home 24 hours a day. I completely understand what you are going through. I am in need of a motorized wheelchair. It is not that I am giving up, I just need to be able to function and have the ability to do things that I cannot do because of my condition. It is a struggle for me to go back and forth to the bathroom. I can only walk with a walker. It is so very painful. I do not understand why anyone would think or say to you because you want a wheelchair and feel the need for one that you are giving up. I cannot understand why anyone would say that. They just do not understand what we are going through and the pain that we endure.
If you need someone to talk to I am here. I understand.
Hi, I have PSA and RA amongst other problems I have Fibromyalgia as well and have had minor flares in the past few years. This last one ended me up in the E.R. a few days ago. i think I had every side affect Fibro causes including trouble breathing, I went to the ER as I had a blood clots in my lungs a few months back due to a surgery and almost passed away due to a saddle clot. I have not been walking good at all, it is so painful, I thought I was in an arthritis flare which i am a little bit but most of my issues have stemmed from my Fibro flare. I have a wheel chair and an thankful I have it, makes it so much nicer to go places and feel less pain. I am not coming out of this flare and since this is my first one that has put me in bed for 5 straight days now I've been in tears, I had no idea it would be this painful and cause so many different problems. I have an electric scooter as well as a friend gave me his mother's and I have to use it Or i cry my eyes out just standing up. Could anyone educate me on the time Fibro flares up? could it be weeks? months? I know my PSA when flared can be 3-6 mths, Sure hoping this is not the same for Fibro. What a horrible disease we suffer from :( it's not easy at all. And so far have not researched on how to help myself I welcome suggestions please.
I spent three years in a wheelchair - totally unable to move.But that was a consequence of being for a long time on Steroids. I had something called "Steroid Myopathy" which is when the muscles are destroyed from the steroids. Now, I still have a wheelchair and if we go out to a mall I use it. The hard part now is that my shoulders, elbows, and wrists are so bad I cannot propel the chair any more and have to rely on someone pushing me. Finally for my birthday last December, my parents got me a rollator walker. It's one that has a large storage bag that does double duty as a seat. it also has four swiveling wheels. It does not hurt my shoulders too much because it moves so easily all it needs is a feather touch to make it go. I take this and then while the people I"m with are looking in stores or on line checking out, I can just sit on my walker. Of course you do need to be able to walk a little bit to use it.....but all in all Ithink the rollators are great and make for good independence. Also they can turn tight circles so are easy to use in tight spaces.I hope this helps
Bless you I feel your pain. It has been so hard dealing with this condition. I feel like no one understands. I have not been able get the best of care because of the lack of Healthcare options in the United States. I desperately need a motorized wheelchair, because I am confined at home 24 hours a day. I can only walk with a walker and it is very painful and hard. I have been so depressed and lonely. I hope that you will feel better. Please stay strong. i know how hard it is. you are so lucky that you were given a motorized scooter because it give you more freedom.
Hi, I'm so sorry about your quandary. Have you investigated a local lending closet? Here in the North East USA we have places that collect medical equipment that is no longer in use by the owners...they donate it. It is just possible that you could find one that has an electric wheelchair. The other place you can look is Craigs List. online.I'm SURE you can find something there.Don't give up hope.
Cynthia
starzzbiz said:
Bless you I feel your pain. It has been so hard dealing with this condition. I feel like no one understands. I have not been able get the best of care because of the lack of Healthcare options in the United States. I desperately need a motorized wheelchair, because I am confined at home 24 hours a day. I can only walk with a walker and it is very painful and hard. I have been so depressed and lonely. I hope that you will feel better. Please stay strong. i know how hard it is. you are so lucky that you were given a motorized scooter because it give you more freedom.
I'm sorry about this. You said "another" four months. How long have you been on MTX? They can likely add in another DMARD, and have you fail dual therapy, and move you on to a biologic sooner. And you're on steroids? This is not a long term solution. We have a number of success stories here of people who were using wheelchairs, got on a biologic, and are now walking, and even hiking.
Sympathetic isn't helping you much, as permanent damage may be happening now. And why can't you do OT to deal with where you are at now? Sympathy is nice, but it's not getting you the treatment that you deserve. You may want to push harder, and strongly consider a second opinion. If you're within reach of a larger medical center, such as a University center, you may want to consider this.
Where are you? You may be able to get advice re. doctor.
I have recently purchased a transport wheelchair from Walmart (of all places) online. It was extremely affordable. I use it very seldom so far but it gives me peace of mind that many things that come up are doable. I use a cane now all the time. If you would see me walk I am probably to the walker stage but just haven't admitted to that yet. :) I am still on the quest of getting this awful disease under control after several years. I am not giving up or giving into the disease, just taking care of myself. I have so much stress when something comes up that I may want to or really need to participate in. Life goes on and I'm just adapting. My rheumy has never once suggested the use of anything concerning mobility. I don't know if this is normal or not.
Never feel bad about ranting or venting. Sometimes that is the only shot we get back at PSA. I am damn mad at it and I don't care if it likes it or not. lol! Hugs to you!
Hello again, I find it unbelievable that they are judging where 'you' are and what 'you' are feeling as to whether or not "THEY" feel you deserve a wheel chair, what a joke, if it is bad enough that yoyu have to see them because of the pain and immobility you are dealing with they should 'take care' of you instead of try to make you feel bad for wanting to use a wheel chair. There should be no question asked. For Pete sakes what is wrong with them. When I asked my PCP about an electric scooter he said it is very difficult to get one, he said it is 18 pages worth information to fill out and he doesn't think I would get it in the end, and put in the order for a wheelchair instead. I did mange to get an electric scooter (from a friend thank god) but it costs close to 1,000 to have the trailer put on my car so I can't take it anywhere and be able to use it. I was on Methotrexate for ages and it began really shutting me down, sleeping tons and so much fatigue, we now know it was due to both arhtritis/meds/fibro. My doc took me off it and I'm on an I.V. now every 6 weeks called Remacaid 700mg, it has helped immensely for years, however, recently I'm in the worst flare fibro wise that I ever been in. Ilike you, cannot move easily, I cannot walk, the pain in my legs have kept me up last 5 nights, I have fibro fog and it's just strange how I cannot remember every day words sometimes and it gets frustrating. I'm hot and cold/headaches and some short of breath, I get out of breath very easily. I hope your doctors get your sorted out and quickly, it's so unfair to let you suffer. So sorry you are going through this, next time you visit tell them you cannot move with out extreme amounts of pain and you need this wheel chair to be able to function. Don't give them the choice to tell you what you need.
I don't use a wheelchair on a daily bases - don't have one, and can't afford to buy one! I do have a cane, though the doctor recently gave me a walker and is insisting that I use it instead because I get unbalanced too easily with the cane. When I do go anywhere, though, I rent a wheelchair. It adds to the cost of whatever entertainment I am pursuing, but it is so worth it. About once a year we pack up my family and head to the Texas Renaissance Festival for a day. We used to go for a weekend and camp, but camping isn't working so well for me anymore. So we stay at my niece's house and just go for the day. It is a way for the family to have fun together, and I can still get around in the wheelchair. If they have an electric one, I rent that, otherwise, I rent the old fashioned kind and my husband and kids take turns pushing me around.
hello there I am new this to this site I am also glad I found it I myself have not used a wheel chair yet I do use a cane sometimes but I have to admit there r days I should of but I keep telling myself I don't need it yet but I have come to realize it is not that I don't need it because like so many what r people going to think so I keep pushing myself along and then the pain really gets bad .But after reading your post I got to thinking I know my body better then anyone else bye using what I need at that time this is about me and not what people think or say until they have walked in my shoes with this terrible diease let them think or say what they want I know exercising is good for you and keep moving but I have also come to realize it at times my body needs the rest .my rheum told me to do what I needed to there are days I have to use a neck brace never be sorry for ranting we all need to that once in awhile what better place then here with friends who understand have a great day
Is someone saying you have PsA, RA, Fibro, and ME or is this an accumalation of several docs? I'm not saying its not possible. By the same token taking tramadol and codeine together is a pretty iffy combination throwing steroids on top of M.E. and narcotic is pretty scary.
Are you near a University medical center or major clinic. I would seriously consider a comprhensive team evaluation. When done One Rheumy and a pain management specialist. Your med combination is potentially very problematic. Take a tylenol and it could be deadly.
When it first struck me I could not put my foot to the floor I was house bound then put on crutches luckily after MTX and steroids my foot recovered though it seems to turn inwards now when I walk I was told not use a chair of any sorts no matter how bad I got because my muscles will crap in I'm 41 yrs old the pain and inflammation tend to move abt now get it in my Ribs and shoulders at the moment the Psorisis is my biggest problem I took ill to MTX so had to stop it I am now on Lefluamide something like that so far ok but it's only been 3 days, Being cold makes it worse and with energy prices soaring it's not optional to be warm all of the time, I find radiators dry yr skin anyhow, The other day my skin flaked all over the nurses room I apologised but the look on her face told me a story and I just thought yeah well that's what it does I just really wanted to the ground to swallow me up, the point is we all have our rants and I want u to know that u are not alone in yr woes, look u know what u can and can't do it's your life so if u think a chair would help then I'd go for it. Just don't become reliant on it though if your condition improves u need to try to keep moving even if it's not much. But attitudes do make u feel you are a failure but yr not yr just trying to live around it so don't feel bad. :D
If you do use a wheelchair for any length of time it is important to be in Physical Therapy to keep exercising those muscles. One other VITALLY important thing is to have your PT stretch your hamstring. It will tighten up in no time if you are in a wheelchair or even if you are not too active...there are simple exercises to do...I"m sure even online you will find a bunch of them...Or look on YouTube, It is quite painful to have this tendon stretched but it is essential
Hi, just wanted to let you know I am on disability and only had to pay $19 a month, sometimes I couldn't pay it either and am a bit behind but maybe you can get one as well this way? tmbrwolf329 said:
I don't use a wheelchair on a daily bases - don't have one, and can't afford to buy one! I do have a cane, though the doctor recently gave me a walker and is insisting that I use it instead because I get unbalanced too easily with the cane. When I do go anywhere, though, I rent a wheelchair. It adds to the cost of whatever entertainment I am pursuing, but it is so worth it. About once a year we pack up my family and head to the Texas Renaissance Festival for a day. We used to go for a weekend and camp, but camping isn't working so well for me anymore. So we stay at my niece's house and just go for the day. It is a way for the family to have fun together, and I can still get around in the wheelchair. If they have an electric one, I rent that, otherwise, I rent the old fashioned kind and my husband and kids take turns pushing me around.
It's perfectly fine to rant and you are Not giving in if you use a wheel chair. You are instead choosing to participate in life again to the very best of your ability. If you need wheels to help you gain that then go for it. You can sit in bed and be sad or you can sit in a chair and at least get around and be apart of your own life again. Your children will appreciate you being in the room for them even if you do nothing but enjoy their company. They will certainly enjoy yours after months of mommy being in bed. Besides you can always have "try mommy's chair night" and let everyone take it for a short spin around the yard! think of the joy on their faces when mum can attend a school play or such because of your cool wheels. Insist your doctors prescribe one for you, if they do not, put the word out in your community that you are in need of a good used chair and see how many people have spare wheel chair hanging around, you will be surprised I bet. Just be sure you get out of that chair as often as you can and exercise to the best of your ability. Those four months will go by faster than you believe if you focus on your kiddos! God bless :)
Thanks. That's a good option to know about in the future. I'm still trying to get on disability. So for now I have no income, and we are living on what my husband makes....which is enough, but certainly not a plush life. Each month we have to be really careful about how much we spend on things like groceries, and our credit card bills are all in default....but we are making it. Eventually we will get everything going the right direction again. If disability approves my application, I'm sure there are several options for getting the equipment that I need. For the meantime, I'm making do with what I can find. <shrug> it's all good. Leesa415 said:
Hi, just wanted to let you know I am on disability and only had to pay $19 a month, sometimes I couldn't pay it either and am a bit behind but maybe you can get one as well this way? tmbrwolf329 said:
I don't use a wheelchair on a daily bases - don't have one, and can't afford to buy one! I do have a cane, though the doctor recently gave me a walker and is insisting that I use it instead because I get unbalanced too easily with the cane. When I do go anywhere, though, I rent a wheelchair. It adds to the cost of whatever entertainment I am pursuing, but it is so worth it. About once a year we pack up my family and head to the Texas Renaissance Festival for a day. We used to go for a weekend and camp, but camping isn't working so well for me anymore. So we stay at my niece's house and just go for the day. It is a way for the family to have fun together, and I can still get around in the wheelchair. If they have an electric one, I rent that, otherwise, I rent the old fashioned kind and my husband and kids take turns pushing me around.
ahhh I know I too understand where you are, we were both laid off on the same day i was having numerous medical issues during that time and would never have landed another job, I needed an ankle fusion and was in horrible pain every day, he then approved disability as the entire year I was going down hill constantly. My disability does not pay much I worked part time while raising my daughters in the school system and off summers with them could never afford a babysitter for 4. So my disability is very low, but it helps, we don't eat well the last week o the month almost every month. and we rely on my husb income too he had 4 total 40 hour weeks this year. some weeks 15-20, we are totally in default with credit cards and big time with medical, we almost lost our home but are still hanging in there, only 4 yrs left and I pray we can make it till then. it's been rough, we sold our 2nd car to pay our house taxes last year. It's just been a mess. I won't give up, "this too shall pass" as my mom always used to remind me. :) Hope you get what you need to help you soon. If I loved closer I would share mine with you.
tmbrwolf329 said:
Thanks. That's a good option to know about in the future. I'm still trying to get on disability. So for now I have no income, and we are living on what my husband makes....which is enough, but certainly not a plush life. Each month we have to be really careful about how much we spend on things like groceries, and our credit card bills are all in default....but we are making it. Eventually we will get everything going the right direction again. If disability approves my application, I'm sure there are several options for getting the equipment that I need. For the meantime, I'm making do with what I can find. <shrug> it's all good. Leesa415 said:
Hi, just wanted to let you know I am on disability and only had to pay $19 a month, sometimes I couldn't pay it either and am a bit behind but maybe you can get one as well this way? tmbrwolf329 said:
I don't use a wheelchair on a daily bases - don't have one, and can't afford to buy one! I do have a cane, though the doctor recently gave me a walker and is insisting that I use it instead because I get unbalanced too easily with the cane. When I do go anywhere, though, I rent a wheelchair. It adds to the cost of whatever entertainment I am pursuing, but it is so worth it. About once a year we pack up my family and head to the Texas Renaissance Festival for a day. We used to go for a weekend and camp, but camping isn't working so well for me anymore. So we stay at my niece's house and just go for the day. It is a way for the family to have fun together, and I can still get around in the wheelchair. If they have an electric one, I rent that, otherwise, I rent the old fashioned kind and my husband and kids take turns pushing me around.
Hi. I used a wheelchair to teach last spring and summer (I'm a professor and the movement on a cement floor teaching was too much for me). It was an incredibly difficult, humbling experience. I learned much about disability and became a real advocate; partially because I was already an social justice activist and it was logical. Fortunately the inflammation on my legs has gone down about 50%.I also do regular yoga - just small things. I still find riding a bike easier than walking and I definitely have a limit - my legs are now very weak (I feel like a 3 year old when I walk). I'm feel like my PSA is going into remission - it's about 50% better than last spring - I try to continue to believe this, take sulphasalzine and 5 tinctures from a Chinese dr, see an osteopath, as well as many other health practitioners, allopathic, Eastern and Western medicines. I don't know what's working but something seems to be. I have a great Rhuemy and he confirms that I should keep doing what I'm doing. I've also stopped eating dairy and gluten. I"d also think about seeing different practitioners (Western medicine and others...)I wish you much luck and hope you can also try canes and whatever works for you. I find that metaphors of myself doing something healthy - in my case dancing on a majic carpet help to get me through.