Hi everyone. My husband found your site a month ago. We've been reading your posts and have learned we are not alone. My husband as had AS since he was 18. He was finally diagnosed two years ago at 48 yrs old. His doctor said AS was rare and gave us very little hope, we're looking for a new one. My husband's pain started in his hips and lower back. He went into remission during the 1990's. But the pain has come back worse than ever. His spine is fused from his hips to his chest. His neck hurts all the time. His left knee swells up and is another source of constant pain. He is unable to completely straighten out his knee now. He can't take NSAIDs. They mess up his stomach. He was on Humira. It made him feel like he had the flu without any decrease in his pain. He is currently taking 150mcg of fentanyl patch every two days and 150 vicodin each month for break through pain, and still he is in constant pain. Is anyone else in this much pain? What can we do to lessen his pain. We have just about given up on the medical world for help or answers. Thanks.
Hi Jeanne,
Welcome to Kickas.org. I'm sure you and your husband will like it here. I'm afraid the fentanyl patches and vicodin aren't going to do much for the inflammation, and that is probably why he is feeling so much pain on a constant basis. He will need something to keep that inflammation down. Narcotics are great for what they do, but I don't think they were created for fighting inflammation any. I see NSAIDs are out so I am hoping one of the other biologics might help. If you look around a bit, you will noticed people talking about NSD, which is a diet that alot of people here follow to relieve their pain and other symptoms. Maybe he would be interested in that?
In the past I had to struggle with constant pain, but now I'm fused up so the pain isn't as harsh in these stuck joints, plus I am using some alternatives, watching what I eat, vicodin etc. I'm just trying to get by on what I can because I can't have many meds either.
Your probably not aware of it, but the forum category we are talking in is a brand new category for people with RA. I'll go attract some attention to get people to notice your post.
Take care,
James
Hi James, It's nice to meet you. I realized I was in the wrong section after I submitted my post. I guess it shows that my strong suit is not woth computers. Thanks so much for your help. I'll have my husband read your comments. Jeanne
I can certainly relate to the pain, it's something I've been struggling with since I got sick about four years ago now. For me, there aren't any flares, it's just always on and I found myself praying for death eventually. Pain like that will drive anyone nuts in time.
My top priority was to find a way to stop the pain, even if it was only for a few minutes now and then...just to stay sane(ish). It sounds like your husband is being dosed like a horse, hopefully the meds offer him some relief.
I recently re-discovered smoking pot and I cannot say enough about how absolutely magnificent it is. Eating the cookies I get from a local Compassion Club is actually the best way and the effects last all day long...sure I'm a bit stoned and my posts are goofier but I really don't know how much longer I would've been able to hold on.
Obviously, this isn't a very good option for everyone for various reasons but if you can manage it, I would highly recommend it for anyone.
The whole doctor thing is so touchy, it's really important to get one you like because we see the rheumy quite a bit. All of my doctors tell me the same thing...basically, "it sucks to be you". I like them though, I would rather get the straight goods.
It is an incurable, degenerative disease after all.
On the upside, there are plenty of people here who advocate the No Starch Diet - if you don't know all about it, you soon will.
Also, I have heard that once things fuse up, the pain can become more manageable.
We're all really glad you found your way here and wish there was no reason for a site like this to exist. But since we're all here now, we might as well get to know each other.
Take care,
Chris
Welcome Jeanne - glad you found the KA family. All here to help and support you.
Can relate to blown up knee. Have had that a couple of times. A wee surgery helped matters first time round. Arthroscopy, lavage and debridement. Worked a treat. Lasted me several years. Knee blew up again about 4 yrs ago. Could not straighten it again - needed another arthroscopy and lavage etc. But, had no top-up insurance and NHS wait was, like forever. So didn't have it done. Eventually settled down. Phew! But I sure could have done with that surgery!
As for the back. Mine jips, but nowt like to what your husband's sounds to be doing to him. Fused hips to chest... Strewth. Well, fused 'usually' means that the pain lessens? Needs an antiinflammatory to deal with this'un. Celebrex worked well for me until it exacerbated my LPRG/GERD. Now take Nexen - which I don't believe is available in the USA. Like your husband, unable to take the NSAIDs - takae my stomach out. They've done a real number on me in the past.
To help with spinal probs I basically take LDN - low dose Naltrexone. Helps control spinal inflammation. again, can search the boards here for info: lots of info here. Can also Google it up on the .org websites.
Neck probs. That is a horror to deal with. Heated neck wraps, ice? Wearing the occasional support collar when *really bad? These might help.
Hope that you can get to a rheumatologist and get onto some serious drugs. Meantime, check out the Alternatives Forum group. Read up about the NSD (no starch diet) and LSD (low starch diet). This might be a way forward. IF the diet works, then will not need the biggie drugs. 'Smile'.
Meantime, seriusly suggest that you get an appt to see an orthopaedic surgeon. Get that knee looked at. Sounds like osteophytes - and could well have a nice wee chunk of bone loose and getting into the articulation of the joint! Nasty. But easily dealt with. The surgery is terrific. Take care -
Molly C (France)
Keeping on Keeping on
Dear Chris,
My husband and I read your post. He smiled and said, "That's me." Looks like we have a lot of research to do, both with the new diet and with alternatives. Finding a new doctor will be tricky. We have been asking around for referrals. None so far.
Thanks to everyone. We finally have some direction.
God's peace to all ,
Jeanne
Welcome
47 here with AS raging since teens. I always figured the key to battling was discerning the pains cuased by inflammation from the pains cuased by muscle spasm or physical alterations due to fusion.
Massage has been enormously helpful for my neck and shoulders and ehadaches since most of those pains which were the sharpest were from muscles and soft tissue issues that were ancillary to my fusion.
My knees hurt like heck for a long time because my hips had fused so young, hip replacements helped the knees and luckily the knees didn't get worse.
I gave up on NSAID's more than a decade ago except the rare OTC ALeve. Actaully found a rare use of low dose of them does more good than when I was on a steady of diet of them and does not hurt my very damaged gastro system.
I don't know form your post how active or inactive your husband is because of his condition but I try like heck no matter how bad I feel to get some exercise or stretch every day.
SOme have done wonderfully on DMARD's or things such as Sulfasalazine. My mother also with AS swears by it and is way better off than me.
Folks here will tell you about benefits of diet. WOrth a shot.
There's always something that breaks through a bit. Welcome and keep trying.
just wanted to say welcome and as steve suggested, deciphering the cause of the pain can help a lot. i can't take NSAIDS (wish i could cause they work great for the inflammation for me, but nasty for my stomach) so i use ice for my inflammation. would use something more powerful if only i could get a DX and thus treatment. did get the doctor to agree to low dose naltrexone (LDN), using his argument of his not wanting to put me on a "dangerous" med without knowing what i had, convincing him of the safety of LDN according to the literature; does seem to help, but not enough, need something more. the other "pain" i get is as steve suggested, the muscle spasms, for that my zanaflex and ice or heat help a lot. and important for me to take a walk or some such exercise nearly every day.
PS and ultrasound as needed, that helps my tendons and muscles a lot, have a home unit now, best $ i've spent in a long while.
I can relate to the swollen knee, its terrible. I too have prayed for death, this is one freaking painful disease.
Glad you found us. Wishing you good luck and peace.
Steve - you are always so [*bleep*] positive and encouraging - it's hard to believe what you've actually been through.
That's meant as a compliment.
Hi jeanne
Welcome to this wonderful site. We are all like brothers and sisters here. It is like a special family.
I'm 62 and have AS since I was 10 and dxed at 37yrs.
My condition is in advanced stage. I suffered as much as all the others for many years. My spine is completely fused. The good part is that I am fused in the straight position.(lucky me...huh)I can not advise you about what you need the most right now but I can say that it is extremely important that you work at a good posture. It will make your life a lot more worth living to have a fused spine in the straight position.
Here is how I managed to stay straight. I lay on my back(use a pillow if you have to)on the floor as often as possible several times a day. I have a hard bed and never sleep on my side always on my back with a pillow under my knees. Or on my front using a pillow where needed.
You will find this hard to do at first but if you are able to do this it will get easier as the yrs go by. Breathing exercises a helpful as well.
This worked very well for me and now I am happy to be alive. The pain is never severe anymore, I’m guessing that is because I must be done fusing. I am stiff but I am straight.
I hope that this is helpful.
Ray
Hi Jeanne, I hope you and your husband vist with us often. As you can see already with responces that this can be your information highway. Does your husband have a good Rheumy? It's important to have a medical support system of GP, Rheumy, and yes, Orthopedic surgeon. The GP is usually the best to handle the pain management, unless he has a specialist. The Rheumy should oversee the AS and Imflmation, and the OS will be important factor especially right now when it sounds like your husband is more than ready for a knee replacement. I'm one who has not been able to take NSAIDS for years now because of stomach problems but there are new stomach meds out now that will allow me to try them again which is important since I can't use the Inhibitors.
Good luck to you both and I hope to hear more from you.
Cindy
Hello Jeanne,
Welcome to Kickas, much can be learned here so ask many questions if you have them. I have not read through entire thread, but if no one mentioned No Starch Diet, that is another option along with the many medications available to treat AS. The medication that helped me immensely is azulfadine.
Pray you can find some answers,
Tim
Hello Jeanne,
Welcome to KA! I see you're from Emmitt, which is just a hop, skip, and a jump eastward on I-69 from where I grew up in Davison. My parents still live there, and I'm still up in that neck of the woods at least once a month (I live down near Detroit now).
I'm very sorry to hear that your husband is having so much trouble with his AS. With the fairly high doses of the pain meds he is on, I certainly wish he was getting more relief than he is. One thing that sets off an alarm bell for me is the large number of vicodin that his doctor is prescribing every month. Don't get me wrong, I'm not opposed to opioid pain medication in any way--just the opposite is true, in fact, as I am a strongly advocate their use for AS patients who have not had any luck with other treatments. The problem with the vicodin, however, is that it also contains acetominphen (aka, Tylenol), and if he is taking all 150 pills every month, he is taking way, way too much acetominophen. (You don't mention if the vicodin is regular strength or extra strength--I can't remember off the top of my head if the ES contains more acetominophen, but I think it does, so it would be even worse.)
Because he is taking the vicodin together with the fentanyl patches, I assume that it is being prescribed as a break-through pain medication for those times when the fentanyl alone does not seem to keep things under control (although at such high numbers, it sounds as if the fentanyl really isn't keeping things under control at all). Also, if you have found a doctor willing to prescribe both of those meds at those doses, I'm going to go ahead and also assume you have a doctor who has a fairly enlightened opinion of the use of such meds in the treatment of AS, to which I say good for you.
If those assumptions are true, then that doctor should be receptive if you were to approach him and ask that a different breakthrough med be prescribed to replace the vicodin. Among the ones that could work in its place are oxycontin IR and possibly even methadone. With the Oxy IR, the IR stands for instant release, which tells you right away how it differs from standard oxycontin, which is a time-released 12-hour drug. Usually prescribed in 5 or 10mg doses, Oxy IR is a fast-acting pain reliever designed to provide 4 to 6 hours of relief for breakthrough pain. Methadone, while it has a negative stigma attached to it due to its use in heroin treatment programs, is actually a very cheap, very effective short-term opioid that is also designed to provide 4 to 6 hour relief. (Because of the negative atmosphere surrounding it, you might have a much harder time getting that prescribed as a breakthrough med, but I at least wanted to throw it out there.)
When dealing with any opioid drugs, unless you have an absolutely excellent working relationship with the prescribing doctor, it is almost always best to never ask for any of them by name. Thus, if you do decide to approach your husband's doctor about getting him off the vicodin, it would probably be very wise to clearly explain that you are seeking the change solely because of the acetominophen concerns and that you welcome any suggestion the doctor has for a med that could be used to replace the vicodin. That approach would alleviate any chance of a doctor thinking that you were asking for a drug by name because you were drug-seeking.
Now, that just addresses the short-term questions regarding your husband's current pain med regimen. The bigger question here is how can he find better pain relief so that he doesn't even need to take all those pain meds? Well, there are a couple ways to approach that too. First off, you mention that he tried humira, but with very poor results. I'm curious--did the doctor who prescribed the humira ever suggest that you should try one of the other anti-TNF biologic drugs after the humira failed? This would include Enbrel, Remicade, and others (sorry, drawing a blank on their names, you can certainly find info on them in the anti-TNF forum here at KA). I ask this because one thing has been very true for many, many people since the time the biologic drugs first came out and were first approved for AS: Just because one of the anti-TNF drugs doesn't work absolutely DOES NOT mean that the other ones would not work either. In fact, based on purely anecdotal evidence here at KA, I would estimate that more people here have been helped by Enbrel and Remicade than Humira--I know that is definitely true for me. I started on Enbrel almost immediately after it came out, and for about 5 years it worked wonders for me, greatly reducing my pain and allowing me to lead a better life. A quick aside: I have an extremely advanced case of AS, with every major joint involved, complete spinal fusion (and a spinal osteotomy to straighten me out at one point), and limited mobility in almost every other joint. Despite all that mechanical damage, however, Enbrel really did provide me with a reduction of inflammation and a great deal of pain relief. Together with oxycontin as my pain med, the two drugs combined to give me as great a quality of life as I could have hoped for at this stage and allowed me to keep working at my editing job for many additional years.
Ultimately, the Enbrel did stop working for me, as my body eventually seemed to develop a tolerance for it--or made it seem that way, anyhow. I then tried humira next, but it only worked for a month and then failed completely--I had a huge flare at the end of that one month. At that point, I was switched to Remicade, which I have been on for at least a year and a half now. All I can say is that Remicade has been an even bigger lifesaver than the Enbrel, as the relief I feel after every IV treatment is simply enormous. As I tell people when I tell them about the first time I took Remicade, it worked so well and so fast that I actually FORGOT to take my oxycontin the night of my first injection. While that kind of immediate response seems to be the exception and not the norm for KA members who are on Remicade, the vast majority here who have taken it, or are taking it, have had very good results with it. It is important to note that there are a few KA members who have had very severe reactions to the anti-TNF drugs, however, and that it is always important to remember that, unfortunately, the drugs do not work for everyone. That said, I think it is extremely important for your doctor to let your husband try the Enbrel and/or the Remicade. In fact, my rheumy seems to echo the growing body of literature that feels Remicade should be the anti-TNF drug of choice when treating AS patients; given your husband's adverse reaction to the Humira shots, perhaps it would be best if he went ahead and tried Remicade first.
In addition to trying the other anti-TNF drugs, you and your husband should also review the subforum here at KA that explains everything you need to know about the No-Starch Diet, or NSD. There you'll read how there is some pretty convincing evidence that AS is tied to intestinal and gastro problems related to the klebsiella bacteria, which feeds on starch. By eliminating starch from one's diet, many, many KA members have experience relief that ranges from moderate pain relief to an almost complete remission of all symptoms. You'll find that many folks here consider the NSD to be the closest thing there is to a cure for AS--that's how dramatic the results have been for many members. On the flip side, there are those who have tried the diet and found that they did not experience significant improvement, so there is the chance it would not work for your husband. Still, unlike medical options, there are no dangerous side effects to worry about with the NSD, nor are there any expensive medications to buy, meaning there really is no reason someone having trouble with AS shouldn't at least try the diet. After all, the best-case scenario is that your husband would experience some of the same incredibly positive results that others here have felt, and wouldn't that be wonderful?
Finally, if you scroll back through the posts here in the main KA forum, you'll find links to many research articles and studies that talk about the exciting new drugs that are in the pipeline to treat AS and all other forms of arthritis. The most exciting ones build upon the success of the biologic drugs and take them even further--there have been some really exciting results from the drug trials, meaning there is real reason to hope that more new treatments will be available very soon.
I hope you find all this info useful, and once again, welcome to KA from another Michigander and, in the grand scheme of things, a veritable "neighbor!"
Brad
bump
This slid down the board so fast today that I wanted to bump it up to increase the odds that the new member, Jeanne, would see the replies she received.
Brad
I'm really glad to know that you and your husband sat down to read our responses together. There truly is a wealth of information to be had. Some of it is better than others, you will have to try things out and see what works best for you both.
I believe it is important to educate ourselves and then consult with our doctors - having an understanding of how to communicate with doctors will help you so much when it comes to getting the level of care you know you need.
Welcome once again,
Chris
Hi Jeanne, I can't say better than has been said here, just welcome and don't give up. I let two years of my life sort of go because I couldn't get on top of dealing with it emotionally. I'm past that because of this site.
cheers,
CC
WOW Jeanne,
My heart goes out to you and to him...bless your heart!
That is alot of pain meds..I was up to 100mcgs of fentanyl every 3 days and Oxycontin and Tramadol before I started on Remicade. Remicade has given my life back.
For his Dr. to say this is rare..mmm not sure about that just look at all of us..lol
If he/she acts like they dont want to help him then absolutely dump them and find someone who will, there are too many good Drs. out there that are willing to help.
In my search I found that a Rhumy did nothing for me (not slamming ALL rhumys) I now see an Immunologist and he has been my life saver. He didn't make me feel like I was not worth helping or faking it like so many of our other members here have been treated.
I would say finding the right Dr. should be the first step, just my opinion.
Keep us updated.
Hugs,
Lisa
You know, CC, that's what happened to me. I was feeling quite defeated until I found KickAS. And then people who have survived really severe versions of AS or RA and maintained their sense of humour and their kindness made me feel differently about it.
Hi. I'm Jeanne husband. Thank's for all the helpful reply's to Jeanne post. They are very much appreciated. We are now trying the no starch diet. I very much hope it works. Nothing else has.
Just tired of all the tests, doctors, pills and mind numbing never ending PAIN! All hope was quickly fading away until we found Kickas.org. What a God send!
Anyone suffering with A.S. (Especially our loved ones who suffer right along with us) Need Kickas.
I am doubly fortunate to also have a wonderful wife who is understanding and patient to help me through this.
Thank you again.
Marty
Marty and I went for a second opinion at the Clevland Clinic is Dec. 2009. The doctor there suggested that Marty try another TNF drug, he didn't prefer one over another. Our concern is that they are so toxic. I read one woman's post about her liver blood tests were out of wack becouse of her drug. The last thing Marty needs is one more organ or body system having problems. These TNF REALLY scare me.
We have had Marty on the NSD for two days now, well sort of. After we bought the iodine, we found some of the foods we thought were safe were full of starch. Sigh. Starting at square one again tomorrow. Is it possible for him to drink his Coke still? Does the guy have to give up a solutely everything on this diet?
Jeanne
Hi Jeanne and Marty,
Glad you're finding the site so useful and glad to hear Marty is giving the NSD a try. There's no doubt it is a huge adjustment, one that is just not very easy to manage when you first dive in. I know that the folks in the NSD Forum have come up with some amazingly creative recipes for no-starch dishes that really offer some great-tasting alternatives.
I understand your concern about the toxicity of the TNF drugs, and given your fears in that regard, I'm glad you guys are trying the diet first. However, if you do reach the point where you feel it's time to try another one, please know that the highly toxic side effects that you fear the most have proven to be fairly rare so far. Less severe adverse reactions have proven to be more common than we would hope, since such reactions have kept too many KA members from using any of the meds, but so far the most severe reactions that I'm sure you read about when he took Humira have been few and far between, thank goodness. I do realize, however, that just because the instances of high toxicity have been rare, they have happened and when they did, the results were serious. Thus, I do understand your fear. For most of us who do take the drugs now, it ultimately came down to the fact that, without the meds, our quality of life was so horrible that we felt the risks associated with taking the drugs fell into the acceptable category. That, of course, is a decision that every person has to make for him/herself.
Good luck with the diet, here's hoping it works wonders.
Brad
Hi Jeanne and Marty.
Best thing I can recommend to get you off on the right track with the diet is to get Carol Sinclair's book The IBS Low Starch Diet. She has AS and IBS. It's really helpful if you're just getting started and spells out exactly what you can and can't eat. Otherwise you may spend months thinking you're doing the diet when you're still eating a lot of starch...a very common mistake that leads to some people giving up and concluding the diet doesn't work for them.
All the best.....you are most welcome to post diet questions in the "NSD and diet related" sub forum here.
Hi there and welcome to KA.
Have they considered one of hte other biologics for your husband? Just because Humira was a wash out, doesn't mean all the others will be.
OK, I really should have read to the end of the thread before asking that question, as I see you've had input from a dr. at the Cleveland Clinic. Here's the thing, yes there can be bad adverse reactions to the biologic meds, but you have to put the statistics into persepctive. See if you can determine how prevalent a reaction is in 'real world' terms. It's very frightening to read that these meds can cause an increase in cancer, BUT, what you often don't read is quite different. If a certain cancer will occur in, say, .6% of the general population, but in people on biologics that percentage goes up to 1%, well, your chances of being hit by a bus are still greater. Just another way of looking at it. For every truly adverse reaction, such as the woman you mentioned, there are several who have had awesome reactions.
I'm also glad he's going to give the no starch diet a good try. Please give it up to two months of serious work before trying to determine whether or not it's effective. It can take that long for your body to expel the bad stuff and start reacting to the new input.
Hugs,
Hugs,
Thanks for the info and the support. It was getting pretty lonely around here. You all have a sense of humor still. How do you laugh after all you have been through? You have given us hope when there has been no hope for two years.
Jeanne
Thanks, Kat--you handled the whole matter of "dangerous side effects" much better than I did. That's essentially what I was trying to say, but just couldn't get it to come out right. Good job!
Brad
Like Kevin said--if I didn't have laughter in my life, all I'd do is focus on the disease, and that wouldn't be good at all. Luckily, I've always had a great sense of humor and always sought out humor in every form--reading, movies, comics, cartoons, whatever--and that only increased as my disease progressed. The old saying that laughter is the best medicine is absolutely true.
Brad
Hi jeanne and welcome to KA...both you & your husband...this is a great place and I hope yall get as much out of it as I do and yep, laughter is an important tool with this disease, I rate it's importance right up there with breathing...looking forward to seeing you here in the future...
It's been hard for the past year. Marty is getting fused higher and higher up his spine and his knee is killing him. We have been trying to find ways to be a couple again. The things that I would like to do together cause him pain (power walking at the nature center, bowling, watching the symphany, etc.) Other options are difficult due to his work schedule. He rotates 12 hour shifts, 3 days on day shift, three days off, three days on night shift. So, ballroom dancing classes are out, so are other classes like yoga ect., he can only made 1 -2 classes a month.
The kicker is that I was looking foward to our youngest turning three so that we could date again. We have a large family (8 kids age range 22-3 yrs). Each time I felt comfortable leaving the baby with a sitter, I was pregnant again.
I HATE this AS. It has stolen my best friend from me. My husband has changed. Can't tolerate discussions about the small stuff in life any more. It all seems so trivial to him. He tries soooooo hard to be in a good mood for us, but I never know when the pain will shorten his temper. He gets angery and then goes out into the barn to calm himself down and distract himself from the pain. But then I'm left being a single mom again.
I know he hurts and I appreiciate how hard he tries to be up beat, but I'm still left trying to protect the little ones from an outburst. I feel like I am walking on egg shells.
That's why the hope you have given us it so important. Until we found this site, all we had to look forward to was disablity and more pain. It's been really hard. I loved Chris's poem to his wife. Can't wait to show it to Marty. Chris and Marty's experiences with As seem to be similar, which is funny. Marty had a brother named Chris. They were best friends growing up until Chris' death in 1980.
The positve replies are very helpful. Hope feels so good.
Jeanne
Jeanne,
One area that Marty might not have noticed here is the men-only forum, which is called NO MA'AM. If he'd like to join, just have him mention it here or have him send me a PM (each user here has access to a mailbox that can be accessed by clicking on "My messages" under the "My Stuff" heading at the top of the page). I mention it because it sounds as if Marty is dealing with many of the same problems that many other male KA members have dealt with when it comes to marriage and day-to-day living with AS--history has shown us that some men are more comfortable talking about such things only in the company of other men (hence the creation of the men's forum).
And don't worry, Jeanne, we're an equal opportunity bunch here at KA, so there is also a women-only forum available if you would like to join that. Again, the things that are weighing you down are very common problems that many, many other folks at KA have experienced and talked about, so I am certain you would find some kindred spirits in the women's forum. While obviously I have never been inside the women's forum--I have it on good authority that orders are to stone any man who accidentally wanders in!--I've heard it through the grapevine that it is quite a bit more active than the men's forum! If you would like to receive access to that forum, your best bet is to send a PM of your own to the top administrator here at KA--she goes by mig, and I believe she has already left a response in this thread. She loves to hear from new members, so don't hesitate to drop her a line.
Brad
I must admit I find it hard talking about things with my wife and can push her away Its like a thing that just happens I dont mean to. At the moment Im the best I have been for years so things are good and when the pains there and I feel very bent from the Kyphosis I will go into my shell again and wont admit the pain to my wife or any family member so I know how he feels.It puts a big strain on you mentaly having AS thats why so many of us suffer deppresion. Im sure he loves you and the children as much if not more than he always has and it is hurting him being the way he is. The fact that you are doing all you can to support him through this makes you a real hero like my wife who puts up with so much and never complains Its a pity more partners arent like this and try and understand what we go through.
Kevin
Welcome to you both. It is bad when you both have so many problems isn't it? That is the way it is here at our home also. I have RA, AS, SLE and Dystonias and many other things. My husband has severe RA and the OA has just done a number on his knees and he has been having surgeries on them. We just get up and head for the pain pills. :o) Then I make the tea and we sit until we can move and then see who can take care of the other one that day. Some days we neither do anything all day. We have our rheumie appts at the same time. At least we understand each other.
I am glad you are here and so sorry you have the need to be.
I can't sit any longer to read all of the posts but I will soon.
Blessings to you both.
Possi
Hey Ray, excellent advice!!! I too have had AS for over 35 years and have fused straight because of the same ritual of always sleeping on my back with pillow under my knees and stretches to keep important muscle groups strengthened for posture. I wish all newly diagnosed would pay heed to this advice.
Cindy
Cindy
The thing is that I started doing this because it felt good to be straight(pain wise)Not knowing that I would be fusing at the time.I kept it up and am still doing it because it is the only way I can get some sleep.If I try to lie down on my side I can last about 5 min. before I can not stand the pain it will cause.I am straight and if I try to put pressure on my side like that,it is not possible .
I wish more would try this in the early stages of AS as well.
Ray
Hello Jeanne and Marty
It's really sweet that you're working on this together.
Hope you turn a corner soon with NSD. Keep in touch on the diet section and you'll have lots of help and advice from people who know what they're talking about. I do NSD but don't necessarily always know what I'm talking about! lol
Welcome to both of you and good luck.
Ray and Cindy,
Somehow, God's grace for sure, Marty has fused straight so far. The only comfortable position for him to sleep in is on his back. My concern now is for his neck. It is giving him a lot of trouble. He loves to read and that puts him in a slightly bent position. At least now he knows what to be mindful of.
Jeanne
Jeanne, the anger that Marty is experiencing is quite common and unfortunately, very normal. Longterm pain does this to us. The constant attacks from our own bodies do this to us. I was angry for years, and berating myself for being uncharitable and an all round [*bleep*]. Along with the depression that has sat over my life for much of my life, I was a real treat to be with. I was in therapy for a long time, but finally, after 15 years of saying no, I agreed to start anti-depressants. Once my body had adjusted, everything was easier. It didn't go away, and I didn't just stop being aware of it, it was as if the med allowed me to be more objective, less overwhelmed. As I began to get my pain and inflammation under control, it was easier. I thought I was doing well until I made my mother cry one day. That was the day that I knew I had to do something about it.
Here's the thing, longterm pain causes difficult emotions like anger, as well as causing depression. These are just three points on the Cycle of Pain.
If he can break the cycle at any point, it will get easier to deal. Sometimes, he might have to break the cycle 200 times a day, but eventually, it will last longer and longer, and one day, he will realize that he's coping better. I would suggest you get in touch with your local chapter of The Arthritis Foundation. They teach a course called the Arthritis Self-Help program. It's a six week program designed to be led by people living with arthritis, for people living with arthritis. I've linked to their page here:
The Arthritis Foundation I found it extremely beneficial when I took it, and then I trained to be Group Leader of the program (well, it's version here in Canada). It's not very expensive. Here, we only charge for the cost of the book. And you can take it with him, although, you already seem pretty darned understanding.
Anyway, all this long-windedness amounts to a hell of a lot of understanding. And thank you for being there for him. It's hard for people to stick it out with us when we're in a bad way.
Hugs,
Jeanne
The same goes for me for reading on paper (book or other)Two min. in the reading position and my neck is in knots and the head acke starts.
I have positioned my computer monitor so the centre of the screen is at eye level when I am sitting straight in my chair.
His head should be at the centre of ballance on his body.This keeps his neck more in a relaxed position.
I can read for about one hour without any of those problems at my computer.
I pray you will find some relief for Marty soon.
Ray
Jeanne and Marty,
I forgot to include this in one of my posts yesterday. I'm still up in Davison at least once a month to see my folks, and often more frequently than that in the summer months. If you're ever interested in meeting for lunch or dinner one time when I'm in town (or we could meet in Lapeer) so you can meet another AS kicker to talk about stuff in person, just drop me a line via PM here. It's always fun to meet other KA members, and with you guys being so close to my old hometown, I wanted to be sure to extend the offer!
Brad
I dont think I actualy said hi to you yet as I have been a little cuahgt up with my on stuff. Sorry about that. I have been reading your posts though.
So hi to you and your hubby.
Brad,
Thank you for the offer. I'll pass it on to Marty. I read somewhere about a Kick AS meeting that was held in Vegas. That sounds like a lot of fun too.
Jeanne
Hi,
It has been such a God send to be able to talk with this group. The helpful suggestions, support, and the recipes have made such a differnce in our lives. It's nice to know your really not alone. Our first rheumy said this was a rare disease. She would not consider the symptoms that other family members have had as being AS. She also would not talk about the possibility of our kids having it. All the answers we needed were in the hand outs that she gave us on our first visit. Marty has an appt. with a new rheumy next week.
It's good to meet you. You have a beautiful family. You're even smiling in the picture. Warms my heart. Good to see life is still good even with AS.
Jeanne
Hi Jeanne,
Welcome to KA. I am sure you and your husband will find tons of useful information on this website to battle A.S. I encourage your husband to give NSD a good try, as there are many people on who have managed to control their pain just by being on this diet.
Cheers
Alex
