Higherfaith...
What kind of lung disease do you have? My mom also has sarcoidosis which has caused scarring and granulomas in her lungs. Sarcoidosis is another auto-immune disorder. Have you talked to your doctor about all your options? I think that is where I would start first. I know the pain with RA can get to unbearable intolerable levels. Been there too. I was to the point where it took me 10 min. to walk to the bathroom that was 10 feet from my bedroom to fall on to the toilet and then sit there and rock and rock trying to get up the nerve to stand back up. Then when I'd get stood up the pain was so excruciating, I'd have to stand there until my legs would stop shaking and wait for the initial shock of that movement to go down a bit to only take the same walk back to the bedroom, leaning on the wall the whole way. I would be soaking wet with perspiration by the time I'd make it back to the bed. That stuff is scary. I had to go like that for almost 3 months while my liver counts went down so I could start on methotrexate.
Check with your doctor. Get a second opinion. If your not going to a rheumatologist, I would suggest you do. They have much more experience and knowledge than an standard doc. Heck, my reg. doc couldn't figure out what was going on with me...so I came to my rheumatologist as a referrral. I'm sooo glad I did.
Hang in there everyone! There are still good days too...
Hello - not going to be much help. I had Still's Disease - a form of RA as a very young child. I do not remember much about it but I do remember mum teling me the physio got me in the pool to do some exercises. Sadly, mum said a lot of the kids on my ward ended up in wheelchairs.
I get the odd twinge form time to time - it seems worse when the weather is hot actually! Like my bones are rubbing together.
Mum also got me doing ballet - I hated it but understand she wanted my bones to be stronger.
Anyway now I am in my 40's and overweight and not doing much exercise but I am determind to do some as I know it'll help in the long run. Poor mum is confined to a wheelchair when she is out and about and cannot stand for long as her legs give way
Sorry to hear there are so many of you suffereing with this
Peacock,
What you say is true. I think for a number of diseases and ailments, it is VERY important to keep moving. For arthritis sufferers, the less moving you do, the stiffer your joints become.
wow! im so glad someone recommended this group for me! it is encouraging to see so many ladies facing the same problems I have! I have not been officially diagnosed with RA, but i do have many bone and joint problems that trigger RA type symptoms.. i saw an Rheumatologist for years, but the thought of being on meds when i'm so young scared me (i'm 25, but i was on arthritis meds for 10 years and stopped when i was 22). vioxx and a slew of others i can't remember. plus i was tired of getting my blood drawn every few months! hehe.
i actually started taking horseback riding lessons at a HIPPO approved riding facility and it has really helped regain some of my flexability and strength (I used to be a pretty serious rider before i went to college). if you can afford it, i highly recommend it! a good HIPPO facilities have physical therapists that teach the lessons and its all about getting your strength and flexability back and they wont push you to the point of pain..but they will push you. plus, i find it a lot more enjoyable than going to a standard gym.
here's a link if you want to find a center near you: http://www.narha.org/Centers/FindCenter2.asp a lot of them will let you volunteer to offset the cost of lessons too.. I've been doing this once a week and then riding a stationary bike 2-3 other days a week..
I thought I would introduce myself here. I was diagnosed with JRA when I was 2 years old(am 46) and went into remission when I was 6. Had no signs of it until my last year of nursing school when I was 27 when it kicked back in. I had my first two joint surgeries a year later and basically for the next 10 years I averaged 2 surgeries a year. I have replaced both hips, knees, shoulders(twice), elbows, cervical fusion, and a jaw joint (which was recalled and removed with nothing to replace it with). I have done the gamut of meds and currently in a research program doing a med that requires you take methotrexate along with the once a month iv infusions (I also take the normal antiinflammatory/prednisone which I have taken for the last 20 years). SO I guess I am the poster child for this damn disease process (or least I am told).
I have seen my weight fluxuate over the years but this last year I have seen it go up 20 pounds. I haven't been able to exercise/get around much since I have a blown out ankle joint that makes me use a crutch to walk with. So cardio exercise for me is basically getting around period - simple muscle toning/stretching is the norm.
If I can answer any questions, please don't hesitate to ask. I think the best advice is to keep doing whatever you can - even if it just means getting yourself out of bed and dressed in the morning. Any small victory counts!
Robin...OMG you do sound like you've ran the gamut for RA. My prayers are with you. I am currently waiting the for the results of my last bloodwork. I had to go to my rheumatologist on Friday and my CRP from my bloodwork a couple weeks prior was really elevated and showing inflammation somewhere. So after my appt. on Friday, he had me go get it drawn again. IF its still up, we might have to consider doing Humira or Enbrel. I don't feel to bad or achy but I know I've been super fatigued as of late. I'm not sure if my wallet is ready for those pricey meds yet.
To bed with me. Hubby had surgery on his stomach today, and my cold has seemed to develop into a bacterial infection so I just want to find my pillow and curl up in bed with my kids and sleep. I feel soo darn lonely with my husband in the hospital. We have never been seperated overnight before. Kind of a emotional shock for me.
Hi there I have both rheumatoid arthritis and osteoarthritis in my knees and wrists...doctor told me to stop walking for now wants me to use the recumbent bike. Not real sure what to do with this I was just diagnosed with them and I am having a problem with adjusting. Any input would be great.
I am not sure why your doc would discourage you from walking of all things. Are your knees really bothering you? I can understand him not wanting you to do impact type activities, ie running/jogging/skiing/etc but walking is always encouraged to do as much and as long as you can stand it. The recumbent bike isn't a bad deal though if you own one.
Did you get put on meds (asking because it kinda tells me where you are in the "big" scheme of things)? Sometimes when you just get diagnosed because of your symptoms, etc, the doc is giving you a heads up - letting you know that you will need to adjust your activities. You will need to do this but its really yours to do - meaning that you are the judge on how your body feels (he can only go by what you tell him and labs/xrays). You learn that some days you can do anything you want and other days (ie if you flare/have pain) you may need to back off and relax.
Not sure if this helps at all but probably the best advice I can offer.
Hang in there!
Christina: Embrel and Humira are sooo damn expensive - its frightening. I am not sure how people do it! I did Humira and the only reason I could was because my doc applied for a waver with the company which was approved. This meant I got it for free. With my long history of doing all the meds and several research drugs, I guess the drug company figured why not. Unfortunately it didn't do anything for me. I do know that both work well for lots of folks though. Hopefully you have decent insurance (I am disabled so had no pharmaceutical coverage until this Bush plan - which doesn't cover it).
nothing fancy, but it does have resistence, and a calorie counter/odometer/timer thingy. im only 4'10 and have no problems with my feet touch (often an issue at gym bikes). its heavy, so its difficult to move if you have carpet..but its pretty small so i just shove mine under my desk when not in use..
Robin- I really don't know where I fit with all this the doctor told me to stop walking because I had asked him if there was something that I could do to stop my knees from swelling when I walk. I go back today and plan on talking to him some more about what I can do. Right now I am on Methotrexate but I don't know the difference between the drugs??? I do know that my knees have been swelling pretty bad for a while now it started last summer, I can just move wrong and thats it they swell up thus the problem with walking. Stair are a big no no for me it hurts to go up and down them and I am always feeling like I am gonna fall. My wrist really doesn't bother me that much because I had a really bad fracture in it when I was a teen so it has always hurt but I am used to that. I do think that when I get some of this weight off of me that my knees will be some better.
Bemy-I have found a bike at walmart that I am going to pick up in a few weeks for $110.00 it looks really similar to the one from target.
Hello My Name is Bonnie and I ran across this forum when I was looking something up. I wanted to say that I know what all of you are going threw. My Son at age 11 Started having pains in his legs and all the doc wanted to do is give muscle relaxers. When he turned 16 had a bad esposide. He was in soo much pain he could walk or nothng all he did was lay in the bed and cry because the pain was soo bad when he moved. I finally demanded that they quit covering up the pain and find out why he was having it. Come to find out They sent him for a mri and them referred him to a Rheumatologist. In 15 MIn he came in and told us that they knew what was wrong with him and they could help him. He has Anklelosing Spondlitis. ( AS) They did all the paper work and got him approved for Enbrel and that has been a life saver he has been taking it for Almost 2 years and is doing great. Now the problem I have is that he will be 18 and they had medcaide paying for his Enbrel. Does any one kow if their is any help out their that will help out with this. I am currently checking into The PPA that Montel Supports. I can tell you His Shots For 4 50 Mg Of enbrel a months supply is almost 1600 a month. I jest want to say hang in their .
Have your doctor see if the drug company will give him a waiver for Enbrel. ALL pharmaceutical companies have some type of assistance program that will help. They don't advertise the fact because its money out of their pocket. I know that the requirements are stringent - they ask for your last income tax return, etc and always check to see what your insurance programs will cover. Is your son classified as disabled? He still might be able to get some Medicaid coverage - think this varies from states.
Make the doc work for you on this (will be his nurse of course) because reality is if you can't afford the meds, he will have to come up with another treatment plan. I am kinda venemous on this topic since drug companies make soo much money and I find it ironic that the attitude for insurance companies (who don't provide proper pharmaceutical coverage to under 65 disabled) is that it's cheaper to replace the joint than pay for the meds.
/rant off....
Colleen:
The weight will make a huge difference on the knees. If walking is causing swelling then a recumbent bike is a good option. It will keep you exercising while you lose weight. The methotrexate and meds will hopefully get your inflammation process down soon.
I am hoping that when it gets warmer I will be able to walk again, when I first started to walk it was warmer and I was good with that but as it got colder more and more swelling. I do miss being able to go it was my alone time I loved walking before I got the kids up for school. Well I can adjust just get up early and use the bike. Also do you know of any exercise videos that I could use??
Thanks Cianran60 well I have not checked into trying to get him On Disability or anything. His father is He is Blind in one eye and 75% deaf among other things. I will have to do some checking. Thanks for the info.
