Its scary as to what the future holds. i am 48 and have had symptoms since teenager. I have osteoarthritis in all joints and also 2 bulging discs in back.Over last 10 years pain is worsening fast.Can't walk for more than 20-30minutes without being in severe pain from hips down. If Ikneel down its impossible to get up even if I crawl to something to try and pull myself up the pain in my elbows is just too much.No tablets are working. rheumatologist said he couldnt do anything and referred me to pain clinic and discharged me! I cant move when I wake up in morning and cry in my sleep with the pain in my back and elbows.Seems like nothing can be done. the cartilage is comletely gone in big toe joints so sometimes cant even put my foot on ground. Just hope I dont end up in a wheelchair anytime soon!
Hi . I am in a similar state to you and have tried all meds to no avail . I have had one total knee transplant which hurts as much as the other knee !
I need an ankle knee and hip transplant at the moment and the consultant has suggested I learn to live with it . Hard to hear , I already have a wheelchair scooter and crutches ! I have been asked to consider an ankle fusion instead of replacement due to lack of mobility afterwards . Has anyone any experience of these I would love to know
I have arthritis in my back, neck, knees, hips, ankles, and shoulders which are complicated by rotator cuff tears. Also having fibromyalgia makes the pain worse. My pain got to the point I could not stand it. Had it since 30's and now 56. Had right hip that was bone on bone replaced in Feb 2014,left knee in Nov 2014 and left hip Sept 2017. The pain is gone in those areas but still bothers me elsewhere. I was a nurse before I had to retire in 2011 due to pain. I now have to go to pain management where I get injections as well as pain meds. I have also lost almost 50 pounds, quit smoking and try to exercise regularly. Positive attitude is imperative. I would not be able to deal with it without this. My feelings are that I may have pain everyday but there are so many with cancer and other things that are a lot worse. So I try to count my blessings. I understand the concern for the future but try to live each day the best you can. Get surgery if you can to take pain away. I was told I still will need right shoulder replaced in next 5 or so years but will cross that bridge when the time comes. We all have our burdens to bear. Glad I found this place to vent along with another support group I go to.
noplaybarbie, I just read the thread of your osteoarthritis. Boy how I know how you feel. My osteoarthritis started on me in my late 30s. Mine in now in my spine as well as my neck as well. I just found out back in October that it's starting in my neck. Mine is also in my right hip as well , had said all of this the thought has crossed my mind if this will eventually put me in a wheelchair. I already had days that I tire out quickly. Other day my lower spine hurts so bad it damn near will drop me to my knees. I I to feel it on a daily basis in my spine. If I'm on my feet to long it gets worse. I'm only 42 and only can imagine how bad mine will be by the time I'm 52. I was almost 38 when the arthritis started in my hands , the year of 2013. With in 4 years it started in my back. I never thought it would progress this quickly. It's very painful at times. I've yet to find a medication that helps ease my pain . But the thought of going on and investing in a wheelchair for myself has crossed my mind on several occasions. The pain can get intense or to the point it'll have me in tears. Both RA and OA both on both of my parents sides. Twoyes after this started in my hands I was diagnosed with osteoarthritis, June of 2015. At that time it hadn't started in my back it was only I'm my feet, hands and shoulders. Sad to say but I'm only comfortable on my couch anymore do to the way my back is now. I know wheelchairs are exstreamly expensive but from what I've described in my message to you do you think I should look into a wheelchair? Especially the way my back is now and me already having the pain I'm having in my spine. I don't think a walking stick will help me or a walker. From what I've read from your post you've already been going through this as well. I've brought the pain to my gp's attention over ad over . He's not helping me the way I need him to when it comes to my arthritis pain. Thanks Jason
I have always heard that 4 times your body weight goes on knees and 3 times your body weight goes on the hips. If I lose ten pounds I can see a difference on my leg joints.
Hi, though your posting is 2 yrs old I wonder if you are still able to get messages. I also have degenerative osteoarthritis from toes to neck, and I am the only one in my family who has this. I know what osteoarthritis is - but no idea why I have it. Fist time it was addressed I was 33 years of age, but nobody suggested that I should then address it and change how I lived or what I did, or took anything for it - I simply didn't bother as I didn't have pain. I am 70 and am living hell on earth as I am in so much pain, Shall end it there in case this doesn't get to you, if it does and you would like to get back to me you are most welcome. Kind regards Lucia
Dear Lyn,
I am new to this forum...... I have had something "wrong" with my bones since childhood. My father was a doctor and did his best trying to get the best to figure out "what" was wrong with my bones....... in 1986 I became a "lab rat" up at UCSF and received one of the first "non" cemented hip as I was allergic to all the "cements" used for this procedure. Along with bad bones I have the weirdest allergies...... cements, adhesives, resorbing sutures, latex, then the "drugs"...omg.... if I am not allergic to them my stomach will start to bleed due to 40+ years of anti inflammatories such as Motrin and such.... I am fed up with feeling terrible 24-7 too. I use to find relief in the pool too! I can not get in and out of a pool. I so miss feeling better in the hot water of a pool......
My heart goes out to you and all my fellow "intense pain crew"....... what are we suppose to do??......
If you feel like writing me back I would love to hear from you!
Erela
Dear Lucia,
I noticed that you wrote Noplaybar 8 days ago. I tried to write to her today...... I don't know if she will write back but I thought maybe we could chat. I have had bone pain since as long as I can remember..... in my childhood I took Motrin 4 times a day..... for 40+ years until my stomach freaked out and started bleeding. I am only 60 years old. I too am living hell on earth..... My body is eating my joints for some reason that no doctor has been able to figure out. In 1986 I was a lad rat for the first non cemented hip. Now it is broken and worn out but no one will do anything, I went to a hip specialist as the pain in both my hips makes it on some days "impossible" to walk...... I can barely get to the bathroom. The hip specialist told me that my bones are "too sick". He honestly told me that he did not have the skills needed in my case and did NOT believe there is a doctor that could tackle my dilemma........ I need both hips, knees, shoulders and elbows replaced..... the Bionic Woman I would be!!!! ..... and I would still have a bad back and fibromyalgia...... my spine was trashed in an accident and while they fused one level...... the rest of the damage can't be addressed. I wanted to come home and kill myself. Then I looked in to the "right to die" laws. "Assisted Suicide" is only allowed for people who have a terminal illness that will end their lives within 6 months to a year......... what?????......what about me...... I don't want to keep biting my cheek, crying at night, and wetting myself trying to get to the bathroom....... all I can say is that you are not alone...... there a lot of us across this world that share in this horrible situation and existence. All we can do is pray....... I wish there was something I could do for all of us...... I would take everyone's pain...... I will add you to my nightly prayers....... If you wish to write back I look forward to hearing from you...... hugs.....Erela
Dear Jason.....
It broke my heart to read what you are going through........ you are lucky you can be on a couch so don't feel guilty....... I can't even sleep flat...on my sides...stomach.....and have been sleeping in a "zero gravity" Perfect chair by Human Touch. This chair has literally saved my life giving me some way to be "comfortable" even though I still have brutal back pain...... I can't sit in a wheelchair because of my back injury, surgery, and "issues" they never fixed! If I sit on my butt my legs go numb and I fall on my face if I try to get up and walk...... I have to stand for a bit and then.... like a broken toy I clunk along.....lol..... My back surgeon told me about Human Touch chairs...... I wish you lived near me you could come and try one of mine. Yup I have two.... one in the bedroom and one in the living room...... I have the Zero Gravity Perfect Chair that is "electric" as we had a recliner with a hand lever and I could not go up or down..... was pretty funny trying though...... My body is "eating" all my joints and no one has been able to figure out why but now at Sixty I need my broken total hip replacement redone..... the other hip, both knees, shoulders, and elbows replaced........ They need to give me a "body transplant"....... yup...... they gave Wolverine Anamentium....... I need some....... yeah right...... wish full thinking .... did it make you laugh??....... you need to laugh....... and you need to know that you are not alone.......there are many of us sharing in this "daily life misery"..... I will so add you to my nightly prayers...... I so wish I could take your pain from you..... you are so young..... me not so much..... lol......if you want to write back and "vent".... please do.....if not.... that is okay too as it is hard to type anyway.... take care.....Erela
wow...... we have ALMOST the same story!!! my heart aches for you.....and me.... and everyone else that suffers with daily bone issues and pain. My body is eating all my joints and the doctors can not figure out why..... only that they will not attempt and joint replacements into what they call "sick" bone... I do however have the first no cemented total hip replacement done in 1986. It is not just worn out but is also broken and hurts so bad......it can take my breath away..... my other hip is shot too!! my knees, shoulders, and elbows..... yup both my rotator cuffs are torn too! they "tried" to reattach the left one..... that was when they found out that something was in fact seriously wrong with my bones. I have crutches but cannot use them...... the one item that saved my life as I have not been sleeping in a bed for 15+ years because I cannot lay flat is my "Zero Gravity" electric recliner made by Human Touch.... it is called the "Perfect Chair"...I wish I could take everyone's pain..... then maybe my heart would finally give out and I would have no more pain...... yup that is another reason why no one will attempt surgery..... my heart is supposedly too weak.... the anesthesia doctors will not attempt to put me under...... so I was told to go home and take stronger drugs......... really hard to hear..... anyway..... I feel for you Carole....take care.....write back if you wish..... if not that is okay...... Erela
Dear Yvonne....... my heart aches for you..... you are NOT alone.... there are many of us having to deal with an awful existence....... I am writing the congresswoman to see if I can be added to the list for "Assisted Suicide" bill...... it only applies to those with a terminal illness which will end their lives in 6 months to a year. I have been dealing with severe bone pain since childhood. I am only 60 and need all my joints replaced as my body is for some reason eating my joints. I used to get relief in the water...... now I cannot get in and out...... my husband is not allowed to come in and help me dress....... life just sucks........and the doctors tell me to take stronger drugs and not feel bad about it...... they don't know what my life is like..... I do not want to be a drooling dork in the chair......who is still in agony but no can't say anything about it! ......I hope that the "assisted suicide law" will be changed to allow those of us with serious bone issues to "go to sleep" if we choose........ I hope you do not end up in a wheel chair either..... I will pray for you...... Erela
Hi . I have Osteoarthritis in all my joints and have had hip replacements at 23 years old . I was 12 years old when they found out at school that my back looked like I had scoliosis, my mom took me to some orthopedics . I had five orthopedics looking at me trying to figure out what I had because not only was my back deformed so was my hips and I had it in all my joints . I was always very active I love to jog, love exercising working out until my second child. I started having severe pain in my hips and when I would sit and when I went to get up my hips would come out of socket and it was so painful . I could barely walk anymore so I went to the doctor and he referred me to an orthopedic surgeon . The orthopedic surgeon told me that I needed to have hip replacements because I had bone rubbing against bone I had no cartilage left this is why I was in so much pain . So I had both my hips replaced at 23 years old . I really have to say that it did help a lot for a couple years until I went back to work my back started bothering me my neck. I had a neurologist tell me that he couldn’t believe that he had the right x-rays because they didn’t look like someone that was only 26 years old my x-rays look like they were a 70-year-old woman’s, this was my neck and back. I am now 53 My back is so bad I am having problems with bulging disc that compress the nerves and the muscles and there are times where I have accidents where I can’t feel that I need to urinate it’s very embarrassing I don’t go anywhere I’m always in pain. I do take pain medication it don’t help I think the best thing that helps My pain is IB but the doctors don’t want me taking it. They want me taking Percocet... Percocet don’t help me morphine don’t help me fentanyl Don’t help with the pain I can go on there is so many more medications I’ve taken that have not helped . All they seem to do is get me high and I have never like that feeling and I don’t like the withdrawals I got off them completely I figured either way I was going to be in pain because they didn’t take the pain away . I have just learned to cope and just thank God that I’m still here and I’m able to see my grandkids. I know it’s going to get worse and not better but I’m 53 years old now and I’m still not in a wheel chair. I do use a walker, Because I have to my back has gotten a lot worse my feet are starting to show deformity and also my ankles. If you do have osteoarthritis throughout your whole body you’ll make it one day at a time . Don’t give up when you feel good do what you can but don’t ever overdo it. Exercises is very important.. If you can get as much physical therapy, water aerobics is the best for your joints.
You asked if there was anyone else out there who had arthritis all over their body .... ME!!
I have body-wide osteoarthritis, I am 56 and have had symptoms since my 20s. I have already had both knees and right hip replaced, I have had a high tibial osteotomy, lower back double laminotomy and neck surgery due to cervical stenosis. I also have pain and swelling in my fingers, wrists, ankles and feet. It appears to run in the family, my sisters, brothers, and father had it or have it. I am wondering who else suffers from this aweful disease which I believe is not "wear and tear" osteoarthritis but something else entirely. This should be considered some sort of a disorder in its own right.
Welcome to the club! I have a simple question: Has anyone with whole body arthritis served in Vietnam or had parents who served in Vietnam? I'm curious as to DNA damage from Agent Orange. My husband was in Vietnam and has full body arthritis. This started with him at age 50. His son has a very rare form of leukemia. We just are curious as to how widespread this is and if much of it stems from Agent Orange. No one in his family had any arthritis. Thank you for all responses. Muriel
I’m also new to this forum, and I’m in a similar state right now. I had partial knee replacement 4 years ago, now my hip needs replacement, I have little to no mobility in my shoulder—- all on the left side. Cortisone doesn’t touch it. I know activity is important, but if I walk 100yards it feels like 100 miles and my knees throb in pain. It’s taking its toll on my emotions and patience. I’m 65, still work and have always been active, now I worry about my job and quality of life. Apologies for venting. I wonder about both hip and shoulder replacement, which should come first?
i am also trying some dietary changes. Any suggestions are more than needed! Thanks!
My husband suffers severely from osteoarthritis and had both hips replaced at Mayo Clinic in Rochester. One of his hips turned out very well, the other, done later by a different surgeon didn't turn out as good - it always pains him. I have several questions: Are you planning to retire at age 66? If so, I'd wait until than to have the surgeries. If not, since you're still working, I'd probably have the shoulder done first, so it wouldn't jeopardize the travel to & from your job and having to sit at your desk, which would get very painful after a time. If you would be getting enough time off work to recover over, say 1 to 2 months, I'd have the shoulder done, than get the hip done too so that when you went back to work you'd have it all done. I wish you the best of luck - I'm so sorry you're in such pain over this. Mayo Clinic is a wonderful facility and their doctors are very personable and knowledgeable if you're planning on going there. If not, there's probably some facilities near you - do your research, though - on the doctors, their procedures, if they do minimally invasive surgery, which lessens your recovery time greatly. Ask many questions - we did and we turned one 'expert witness' doctor down because of his old approaches. My husband had the minimally invasive surgery with a protein sponge to build the bone from, instead of taking it from another part of your body. Please don't just go to anyone - it's the only body you have - you want it to be done right! Once again, my best luck to you!
I have an uncle who served in Vietnam he has two children neither has any physical problems , yet and they are already in their late 30s early 40s .
Thanks so much for your input. I will ask questions when I meet with the shoulder surgeon next week. I think I would have that done first, as it effects "life" more than the hip - I'm used to that pain and have been trying to walk (not very far) and keep moving. I do hope to keep working for a few more years (I'm a teacher) and maybe could schedule the shoulder surgery for the winter break, which is about 4 weeks. I definitely want this all handled in the best manner, and a lot of that is up to me. Thanks again.
I hear what you're saying (and feel it as well). When I learned I had osteoarthritis, I thought I was lucky. I didn't know it was degenerative, and over the last two months, I have degenerated to the point where I can't walk more than 50 feet. I had one knee replacement, I've had cortisone to no avail in one hip: bottom line, nothing has worked and not I know I have both hips in need of replacement, one shoulder - and it's all come about in the last two months.
Right now I almost have lost the ability to walk - and when I do, it's painful and slow. If I could have everything replaced tomorrow, I would. Doctors don't seem as urgent about this as I am. I worry I won't be able to work.
Thanks to you for listening as well.
I very much admire all the people who are writing into this site. I am a fellow sufferer, age 75.
No arthritis in my family whatsoever. But it has hit me hard. No replacements yet, but hoping for knee, hip, etc.
I have two points to make:
- It sounds like everyone here is dreading a wheelchair. I’m planning on being graceful when that time comes for me. I’m lucky, though, to have a still-hardy husband who would push me around and many sufferers aren’t that lucky.
- I’ve started taking CBD oil for pain and I find it is working quite well. My doc said she couldn’t give me a prescription due to lack of knowledge about Cannibis but she gave me two names of local clinics. I now take it 3 times a day and it makes a huge difference for me. There is still pain but I can function very much better. I take only CBD oil, not THC because I do not want to feel “high.” I recommend it.