You totally have my sympathy...

Ok-all you back pain folks-you totally have my sympathy.

As most of you know, I was diagnosed as a kid with JRA.  It's gone to town on every joint and many organs. Fun times :)  Lately my back has been killing me.  I have damage visible on xrays.  I also have inflammation where the ribs join the spine.  These past two weeks my back has been killing me.  To add to the fun, I splint when I breathe since I know it's going to hurt.  I have intersticial lung disease so I'm prone to pneumonia.  My pulmonalogist(sp?) is concerned since the pain in the back is affecting my breathing.  OUCH

I don't know how you guys do it.  I can't sleep-normally I sleep on my back.  I can't sleep on my side cause of the TMJ replacements.  Too much swelling.  Now my back isn't an option.  I'm so incredibly frustrated.  I go to PT twice a week for the jaw-lymphadema and dry needling.  Today the pt needled the back and did ultrasound.  I have a TENS unit at home so she gave me larger electrodes.  The back and ribs are red and hot so they are actively inflammed. 

I just don't know how you guys can do this day in and out.  I've been lucky in the fact that my spine, while showing damage on xrays, has not been painful.  Frustrated that the Cytoxan doesn't seem to be helping.  Only effect the med seems to have is thinning out my hair.  Good thing I like hats. 

Anybody have any good advice for back pain?  Heat or ice? 

 

I've been on every Ra med. I was my drs first patient on Enbrel way back when. My local drs referred me down to Duke when the cardiac and lung issues were landing me in the hospital for long periods of time. I currently take Cytoxan( a bone marrow supressor) and IVIG. Both are monthly infusions. We just can't get it under control. I now have a nj tube for feeds since my stomach is not functional. The chronic inflammation has caused nerve damage and food just sits in my stomach.

I'm extremely lucky to have an awesome team of drs. Both local and at Duke and MCV(Medical College of Va). They communicate with each other and will text and email me. My rheumy down at Duke has been texting with me about the back. For now he wants me to up the pred to 40mg. I've been on it for 10+yrs to keep the heart/lung inflammtion under control. I am now adreanal insufficient, but there really wasn't a choice. Hopefully the small increase will help. He said to give it the weekend and text him on Monday to tell him how things went. If it gets worse I'm to contact him right away.

I just hate hurting....I know-shocker right?

Straydog-I normally HATE ice. It just makes my joints hurt. But, you are right about the heat. It's hard to know what to do. Ice helps the joint inflammation, but heat helps with the muscles. I just want a quick fix. Don't we all....

Wow, you have a lot of very serious things going on all at one time and that really makes things difficult. Maybe when you up the Prednisone it will help with the pain somewhat. Are you able to take oral meds with your stomach problems or do you take liquid meds. What are you on for pain? I would imagine with the lung issues the drs are somewhat weary of much in way of narcotics for pain. Narcotics can suppress the respiratory system. I have a pain pump and that was a concern with my pump dr when he was doing increases in the pump when it was first implanted.

I know what you mean about the heat/ice thing. Its a real catch 22 thing you know. Hopefully something soon will kick in & give you some relief. Take care.....Susie

This is what I' ve been told, use heat in the mornings to help sore muscles, and ice to calm everything else down at night. However, with RA it is a one two punch, maybe use heat for 15 minutes followed with Ice for 15-20 minute.
I get pneumonia easy and my RA doctors will not use aanything stronger than methotrexate. Really sucks about getting pneumonia, last time I had it I coughed so hard I broke 2-3 ribs was 2010. So very sorry you' ve getting pneumonia, like that.
Can you ask your doctor about lidocaine patches? I' m not smart about medicines like the others on here.
Many well wishes and hope you can findsomething that helps.

I use ice, 15 min on 15 min off. Try to avoid sitting or standing in one place for long. Anti-inflammatory meds. If the ice doesn't help, try heat. Hope this helps some. :)

Chartreux: MTX is a great mainline med. When I was kid we used the injectable form since it messed up my stomach. If your disease begins to progress there are a lot of meds to try. Enbrel and Humira were convienent since I could administer the at home. Hopefully your dr keeps close tabs on your disease. I'm a walking example of how autoimmune disorders can affect not only your joints, but organs as well. One danger of MTX is that it can cause lung disease. My drs aren't sure if the MTX caused the disease or the JRA. It doesn't really matter-once the damage is done it can't be repaired. The MTX bought me years of mobility.

No need to delete anything... This disease bites:( When were you diagnosed? What has the disease affected?

If you look up Methotrexate Lung you will find info. My drs feel it's the JRA that has caused the problem, not the med. No matter what the cause, it's hard to get it under control. I was going downhill fast and, while not at that point, drs threw around the word transplant. Scary stuff. I hated being referred to a hospital 2+hrs away, but it was the best thing that could have been done.

I hate that MTX is the only option you have. Uncontrolled inflammation has landed me in the ICU with cardiac and lung complications. My eyes have permanent damage and will need surgery. The feeding tube is due to damage from inflammation thru the gi tract. It's so hard to know what to do-the disease is awful, but so are the meds. There are people who have had stem cell transplants for severe cases. I've talked about it with my dr since I have such extensive organ involvement. For now I'll stay on the Cytoxan. I just came back from getting bloodwork and hat shopping with a good friend. It might take my hair, but not my fashion sense:)

At this point I feel like the bionic woman-titanium jaw, feeding tube, port.... Cool stuff :)

The increase in the steroids seems to have helped the back a bit. I've also been using the TENS.

Not looking forward to tomorrow. My son has a swim meet an 1 1/2 away. I was going to get a ride with a friend of mine, but her son is sick so they won't be going. Oh well-At least when we get there I'll only have to sit and cheer. Crazy sport-drive 1 1/2hrs to hopefully get from one end to the pool to the other in less than a minute. Go Sealions :)

Isn't it crazy what we have to do to get a good night's sleep? It's a workout just getting the pillows and bed sorted. Nutz :)

I was thinking that the recliner would be a good short term option, but you are right about it causing spine issues. Good ole Lazy Boy.

I do have to sleep propped up. There is some sort of term my Cardiologist uses that explains that. When flat, the inflammation makes it hard to take a breath. Do you think sleeping in a raised position could be a factor in the back pain? I have a couple of those memory foam pillows. Not the expensive ones-they are the Target brand. I also have a body pillow which I love.

My rheumy wanted me to get an MRI, but there really is no point. We know there is damage cause it's on the xrays. An MRI would be more detailed, but that wouldn't make a difference. I'm not a candidate for surgery at this point. The Cytoxan, high dose of steriods, and malnutrition make it far too risky. I mentioned stomach surgery recently, but that was an emergency situation.

So-that leaves us at symptom control. I mentioned earlier that I'm blessed with a great team of drs. I really wish I could clone them for you. Duke wants me to keep the steroids at the level they are now for the weekend. I'm fine with that. Like I said, I think there was some improvement in the back pain, but it's definitely helping the lungs. I'll take all the help I can get. Depending on labwork, we may up the Cytoxan dose. Anybody who has had chemo knows there a fine line when it comes to doses. As it is I have to wear a face mask when I'm out in public for the next few days cause my white count is so low. It usually bottoms out 2 weeks after the infusion which is today so I'm hoping it will rise in time for Thanksgiving. I already can't eat the meal, but I would like to take pics without a mask. Of course I have a lovely feeding tube in my nose. I'm thinking this years pics won't be on the mantle :)

SB-Your dog can join our ranks as well. Thanks for your support. Actually-thanks again to all of you. We are all fighting our own battles, but it's nice to have a place where people "get it". I do seem to have alot of stuff going on, but I certainly don't feel I have it worse that anyone. I think we are all strong individuals. Not only do we get up and survive each day individually, but we also have the strength to lift up others and offer support when needed. I think that says alot.

OK...off to get little man. His travel soccer season ended this weekend. They are having a parents vs kids match this afternoon and then pizza and awards. Obviously I'm not playing.They won their division so my son can't wait. I'm super proud of him. It's a U11 team and he's only 8. I was worried that he would be picked on by the older boys, but they have been great to him. I had to laugh-one game another kid tied his shoe laces for him cause he couldn't get a tight bow. I'm extremly lucky that not only is he sports obsessed, but he's good at them as well. I spend a ton of time on the side of a field or pool deck, but it wears him out. There is no way I can keep up with him physically.Despite having chronic illness, I played sports thru college. The three I did the most were crew, womens rugby, and I showed horses. I so miss sports. Seeing my son play and be successful is almost as good and in some ways even better.

If you can look into getting an "Leggitt and Platt" adjustable base for your mattress it is wonderful, I've had mine for a year, got a good deal on it and my kitties love it when I raise and lower it, I have fun with them. I was dx with asthma as a child, on and off inhalers, use nebulizer when I had pneumonia in 2010.
Was dx with Sero negative RA 3 years ago, but doctors should've caught it sooner, as I have had feet swelling for many years. Was dx with sjogrens 2007 and that's what got me into an RA doctor. My eyes are so dry I have scratched cornea's, and I go thru eye plugs very fast...Car Accident was in 1997 from that I have Moderate canal stenosis, bulged disc's, on both lower lumbar and cervical, was dx with an enlarged pituatary gland tumor 2004, and I go for vertigo testing in December for possible meniere's and I really don't want or need any other things going wrong, But at least I keep occupied with my cross-stitching and cats. The people here are the best, so pay attention to them. Maybe at least look into the adjustable beds, maybe you could try to do monthly payments. Oh and I have a daughter with a heart condition which is no where in the family, she had open heart surgery at 10 days of life, but she is 21 yrs now and doing good, Life sure throws us for a loop sometimes...do you have any hobbies that help?
Maybe ask if your physical therapist can do ultra sound treatments for your back, I used to love the ultra sound treatments on my back and he would do them for me while I was sitting up, as I can't always lie down flat at all. Have you tried accupuncture, maybe look into Chinese medicines, some slow moving tai chi?
Prayers and well wishes..

Still struggling.

Chartreux-good call on the ultrasound. PT used the combo machine on Monday-E stim and ultrasound combined. The goal is the wear out the muscles so the are no longer spasming. It felt good, but unfortunately we couldn't get the muscles to twitch at all. She said she'll try again on Wed(tomorrow). Prior to the combo, I had my dry needling session. Most of it is for the muscles of the upper trap and the jaw. There is so much hardware in such a small and tight location. The muscles are in a constant state of spasm. My pain dr has done a couple rounds of botox but it did very little. I've had a trigeminal nerve block on each side, but it's the muscles that continue to cause the crazy pain. Plus there is still a ton of inflammation. Yesterday my left eye was swollen shut. Had to take pred and use an ice pack. Laying down hurts the back and the jaw/head. I have to stand/sit up to allow the fluid to drain. The incisions for the TMJs are right underneath the jaw line on both sides. This has created a blockage in the lymphnodes so fluid stays around the jaw and face. I go to lympedema therapy 2x a week to have the fluid moved down. I also have a ton of swelling in the muscles and blood vessels. Once again, we are hoping and praying that the Cytoxan will suppress the immune system and get rid of this mess.

Ugh-didn't mean to branch off on another complaint. The back-Hopefully the combo will make a difference. PT did some needling on the back, but no twitches. I also brought my TENS for the pt to position in the best areas. It has 4 pads and does help. I can't reach back to place them cause of my shoulders(that would be a whole other post). My son tries, but he's a little guy. She is going to mark on my back where to place them with a pen to make it easier. Steroids are going to stay at the current dose. Had bloodwork done again yesterday. I'm thinking my white count will still be pretty high judging by the way I feel. Saw the eye dr today and he is very concerned. Uveitis again.

** Uveitis (u-ve-I-tis) is inflammation of the uvea, the middle layer of the eye. The uvea consists of the iris, choroid and ciliary body. The choroid is sandwiched between the retina and the white of the eye (sclera), and it provides blood flow to the deep layers of the retina. The most common type of uveitis is an inflammation of the iris called iritis (anterior uveitis). Infections, injury and autoimmune disorders may be associated with the development of uveitis, though the exact cause is often unknown. Uveitis can be serious, leading to permanent vision loss. Early diagnosis and treatment are important to prevent the complications of uveitis.**

So-the painful back, swelling/inflammation of the other joints, tight chest,fevers, and the eyes all pretty much signal that we haven't found the right meds. I don't want the Cytoxan increased, but I also need to be the best mom I can be. Got my hair cut on Friday to make it look as full as possible, but it's obviously very very thin. Looking at me it's obvious that something is wrong. I have great friends who have made it their mission to find me cute hats. Dr. emailed me again today about a daily injectable med. He gave me some websites to look at to help in my decision. Also thinking of increasing my dose of IVIG.
***Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.
Autoimmune diseases, e.g. Immune thrombocytopenia ITP, and Inflammatory diseases, e.g. Kawasaki disease.***


Thanks yet again for your support and advice about the back. I've found ways to live with my normal daily pain, but the added pain from the back is totally new and different. I haven't been sleeping the the recliner, but I've been sitting in it during the day. Little fish had a swim meet an 1 1/2 away and another mom drove so I could just sit and try to be a painfree as possible. A friend of mine is a massage therapist. She's offered to work her magic, but I'm nervous. Chiropracters are not an option. I have to much degeneration in the neck and spine. Anybody have any luck with a massage therapist? Pain meds are still the same-15mg of oxycodone every 6hrs, 20mg Baclofen at night, and 100mg of Amitriptlyne at night. I've tried patches but my skin breaks out like crazy. Still have the nj tube that I'm ready to go without. Unfortunately, my body isn't ready for me to go without it. I still hurt-don't we all. If I can get to a 5 I'm happy. There's just way to much going on medically for me to be lower than a 5. I'm sitting around a 7 right now. Not acceptable. Pulse was in the 140s at physical therapy yesterday and they'll recheck it tomorrow. Cardiologist changed my heart med to Lopressor after being inpatient for a week. If pulse is still high tomorrow(due to pain) we'll tweak that med.
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Wow-if you read all that I'm very impressed, and thankful. I'm just so incredibly frustrated. I've essentially been sick my whole life so I usually just go with it. I spend days each month down at Duke getting infusions. I look at the people around me and realize just how incredibly lucky I am. This back issue is messing with the routine that I need to function and not go crazy. Maybe I'm making it a bigger deal than it is, I don't know. It just hurts and it's a new hurt.

So-somewhere in this novel is the question-Massage Therapy: Yay or Nay. I know nobody is a dr and I would ask mine first, just curious if any of you guys have experience.

Before I forget-I did make an insurance decision. I had asked earlier for opinions as to what I should do. Starting Dec I am elegible for Medicare. I was very lucky to be approved for SS right off. It's been 2yrs so now I can get health insurance. I'm currently paying $700+ a month for my son and I to be insured through my school system. In addition to SS, I was awarded disability/retirement from the county. Lucky me-county insurance is pretty much the same $ as Cobra. Medicare would be around $100 a month and I would have to fine coverage for my son. BUT-after talking to Medicare and the county, I'm staying with the county. There are just way to many caps on coverage with medicare. One of the biggest issues-Physical Therapy. As I said, I go multiple times a week and it won't stop any time soon. Medicare caps pt at $1800 ish a year. Not per diagnosis-but for the year. I would reach that cap in a month. The IVIG would also not be approved and Duke would have to ask for "compassionate use" of the Cytoxan. Raise your hand if you think Medicare would say yes....hmmm...I don't see many hands. So-I will continue to pay a fortune for health care, but it's the only way to get health care.


Ok-need to stop. This kinda turned into a whiney, venting post. I think I needed it-so Thank You big time. I do have friends and family that try to get it, and they honestly do try. But you guys live it day in and day out.