Fibro, DDD, Arthritis?

General
1

I know I've been beating you poor moderators up on this website. It's always the questions with no answers. That illusive fm answer that we search for, I guess.

Before I even wanted to begin to understand that I was having some kinds of structural problems, I had to have back surgery in 2005 at L5-S1. My disc at that level was removed and replaced with a cage type of device with some of my own spinal matter inside of it. Then the L5 on both back sides were fused to S1 with two rods and 4 screws. My surgeon told me later that he had had both of his hands inside of me at the same time working on cleaning things out. I'm not trying to gross you out. I'm just trying to figure out what kind of arthritis I have. He told me at that time that he went up several vertebra and removed arthritis calcification from the bone. I didn't think much of it at the time. I just wanted to heal. Until this I still felt young and invincible. I was 46 ish.

Then several years later, 2009 I had a fm/cfs diagnosis through my rheumatologist. The blood work and the bone density testing that rheumy did were all normal for auto immune stuff.

I have been trying to study, trying to understand what the differences in arthritis are. I read the Mayo Clinics comparison between Rheumatoid and Osteo Arthritis. I did a test on the same website and I obviously don't have RA. This makes me want to know why my rheumy didn't discuss osteo arthritis with me. He had my surgery records. Maybe because I'm just starting to put 2 and 2 together I think he should have had some magical diagnosis back then. It would not have mattered anyway right?

Does it seem correct that I would suspect osteo arthritis after knowing what the neurosurgeon had told me? I wonder what this will mean to my cervical pain and nerve problems in the future? You can't eat right and make calcification go away, right? You can't yoga calcification away. The only stationary positions I am comfortable in now are lying down or reclined. I cannot sit up at a table for any length of time. Walking is good, although standing still isn't.

I see same rheumy in 2 weeks that I last saw 3 years ago.

I'm just curious what my friends on here would have to say right now. What kinds of things would you ask this doc?

Loving Hugs,

L Kitty

http://www.mayoclinic.com/health/medical/IM03689

2

Hi L Kitty,

Wow, you have shared alot. I must say I think I would get a second opinion. I have been seeing both a neurologist and a rheumotologist as well as my primary care physician. It is very important that you communicate with what all of them are doing. Otherwise, your symptoms and all that you are dealing wih may not be fully understood by all the doctors involved. I think that is the one thing that you need to do. I guess I would discuss every thing I have questions about during your next dr visit. It seems to me that someone should of dicussed this with you in full.

Also, I have alot of lower back problems with severe arthrtis. I have had treatments that never seem to end. So I do know that I failed my bone density test. I am going to try and get mor info on what it is all about and why I may of failed, f that is even the right word. Anyway, I would for sure get a second opinion. Hope it all goes well for you. Good luck. Mary

3

Hiya, L-Kitty,

I'm willing to bet if you had all of us fibro people do a show of hands as to how many of us have the same symptoms in our back, most of us would be waving our hands around madly. So, my dear, I'm left wondering if the fibro amplifies the arthritis pain and if the arthritis isn't as bad as it feels? Of course, in your case, I can't even begin to guess. I don't know the first thing about arthritis calcifying.

It does seem though that when osteo arthritis is involved, doctors never seem to tell you what it is, they just use the word, "arthritis," and expect you to know. Nor do they tell you what causes it or what to expect from it. Or how to protect yourself from further damage. Grrrr.

I DO agree with AngelMary that you should ask your doctor these questions! They're excellent questions and need answering. And I'm curious as to why you haven't seen your rheumatologist any earlier than now? I would think it would make sense to return to him once or twice a year for checkups and to repeat tests, if necessary.

I know I haven't been of much help in the matter L-Kitty. Hopefully others will have better answers for you.

Hang in there, Miss Kitty!

Petunia

4

Hi L-Kitty When I saw my doctor re back pain around 3 months ago, she said, it’s not a muscle pull it’s arthritis. Since I can’t take anti-imflamatories, we discussed other things and then I went merrily (well sort of lol) on my way. In the last week my hands have started to ache and one finger throbs, doesn’t feel like fibro, so I expect it’s just “arthritis”. I’ll be watching the responses to this post carefully for my next doctors visit.

Thanks for posting this L-Kitty I was looking at the Mayo site on Arthritis earlier today, to figure out what type of arthritis it was. The back operation must have been horrendous.

Are you back from your trip?

5

L-Kitty,

I don't know much about arthritis. One time, a nurse asked me, "Do you have re-active arthritis?" She went on to say that reactive means a type you get from viral infections. I don't know...I thought rhem arthritis was from infections. Any way, my continued prayers.

6

Hey Lady,

Sometimes RA will show up on bloodtests, OA NEVER will because it is the only arthritis to my knowledge that is NOT autoimmune, but it ALSO does considerable damage and it ALSO progresses. All kinds of arthritis can be slowed down with medical treatment. People can suffer from RA, PsA, and other types of autoimmune diseases and it will just NEVER show on the bloods, so they look at your skin, your fingernails, the type of pain you have what makes it worse, what makes it better, and work from there. It takes a good Rheum and it sometimes takes them TIME to figure it out, but they can't see you once a year and make a decision from that, it has to be more often.

L-Kitty, you know I'm NOT a Dr, but with all you have gone through with surgery, it just seems that ONE of these DRs can tell you what TYPE of arthritis that you do have! This is what to ask him, WHAT KIND?? WHEN WILL YOU KNOW? WHAT WILL YOU DO??

http://voices.yahoo.com/how-determine-if-osteoarthritis-rheumatoid-4555269.html

7

Osteo is related to bones? Rheumy related to joints/nerves?

8

http://www.mayoclinic.com/health/bone-and-joint-infections/DS00545

http://kidshealth.org/teen/diseases_conditions/bones/juv_rheumatoid_arthritis.html

http://kidshealth.org/teen/diseases_conditions/bones/juv_rheumatoid_arthritis.html

9

Osteoarthritis is a breakdown of the cartilage in the joints. I'm not sure if they call it that because of the joints being in between the bones but that sounds most logical to me. I have it my back, both knees and right shoulder. It's likely in other places in my body due to the many joint subluxations and dislocations caused by the EDS, but those are the ones diagnosed with xrays. Ehlers Danlos Syndrome is a genetic connective tissue disorder that causes the body to make bad collagen. Since collagen is pretty much everywhere, EDS can affect any part of the body. It especially causes problems with joints though because of the high content of collagen in cartilage. Osteoarthritis can be caused by other things, including joint overuse like sports and such, but I mention the EDS because that's the caus of mine. I have the hypermobility type and that's the one most likelty to cause OA and RA. I talked to my cousin and RA is something that a lot of my family members on that side have. My husband tells everybody that I have bad glue lol.

The problem with EDS, and other "zebra" diseases is that doctors consider them rare, so they rarely ever look for them. Very few doctors have much knowledge about EDS. There are also other diseases they rarely look for but this is the one I know about. It also seems to have a high chance of correlation with frbromyalgia. Many EDS patients have been diagnosed with fibro first. That's how it was for me. I don't know much about other zebra diseases though. My point is that it's very hard to get a doctor to look for a rarer disease but they can still happen to people. If anybody needs EDS links I have tons of those and tons come up in Google. I hope they figure out the type of arthritis you have and tell you what it;s called.

10

Oh, my sweet L-Kitty, what you have been through! It is so hard to have one thing, then another, and then figuring out what the mystery thing is.

I'm glad you have had a bone density test. That rules out osteoporosis, which affects vertebrae. I would ask how often a bone density test should be done.

Have you told your doctor how much difficulty you are having? I would assume so. I would ask directly if you might have OA. Why wonder when you can ask.

I have osteoporosis, DDD, and arthritis. The arthritis has caused bone spurs on the vertebrae. I would ask if the bony calcification that was found in surgery could be due to osteoarthritis. (I take diclofenac for arthritis because in the long term it is easier on the stomach.) I am guessing that if you take an NSAID and it helps, that's a clue for OA. It would be something to tell your rheumy.

This is a coping tool I have to do. Perhaps you have tried it? I have similar spinal problems with standing and sitting. As a coping mechanism, I sway from side to side if I absolutely must stand. I also use a walker to carry my purse and medical paraphanalia so there is no weight on the spine. If I have to wait in line to see the pharmacist directly, I place on knee on the seat, then alternate with the other knee. If this works, then I would tell both the rheumy and the neuro that you are having to do this.

I agree with angelmary that you should probably get a second opinion. If you can't do that, I would ask the neuro more about whether the bone that was removed resembled OA bone spurs or RA. He might have it in his notes, since that was 8 years ago. Are you still in contact with him?

One other note - look for any fibro myofascial trigger points that may have occurred due to the spinal issue. I have many, including those that control bodily functions, posture, breathing and even fibrillations that run up and down the spine. These are trigger points which cause great pain, and were not there before my injury.

Spinal pain with fibro and some form of arthitis requires multiple approaches. I would ask the doctor which approaches he would recommend with this combination to relieve pain and regain some quality of life.

I hope this is of some help to you. You are a true warrior!

Hugs,

Susan (Scribelle)

11

Wow

I have not had surgery or injury on my back but I do have constant lumbar pain from the fibro the more I do (walk. Basically move) the worse the pain is. I am housebound and really only comfortable(not accumulating pain) when I am like you reclined or lying down.I cannot lift my body up from the floor and I have trouble, pain lifting my upper body up when I bend over say to pick something up from the floor. I have been like this since I developed CFS, fibromyalgia 8 years ago. I have progressively deteriorated and spend most of my day resting.

I do have arthritis in my Hands and stiffness in all my joints. nothing really helps, anti inflammatories make no difference, except plaquenil, but as it has a side effect of visual impairment I’m not prepared to take the risk.A certain amount of joint stiffness seems to go along with fibro at least it has with me.

I don’t know if this is of any use to you or not, but really your story reminded me of a body dug up in eastern europe, it was 5 thousand years old and believe or not the person had arthritis, ? Human condition. Anyway I must stop Barb

12

I surely hope that you can get some answers and some relief. I know what this pain is, although I do not have a rod in my spine. I am so sorry that you have this to withstand. You are a warrior, and I am glad you are my friend!

If my answer seemed a bit blunt, please forgive me, it is because I still have the grandson and he is usually jumping up, and down behind me, jabbering in my ear, trying to get me back to a game, or onto something else with him! I really do care about you! They pick him up tomorrow, on the 7th day, and I'm crawling in a hole with my pain meds!

My Mom said she is ready for a hefy dose of Thorazine! ha! Maybe me too!

13

Oh, I'm holding back tears. Well, there they go. Good try. You all are so kind and overwhelm me. It feels so good to have people who understand.

Since I haven't seen the rheumy in 3 years I do have a lot to ask him. He is a young doc who didn't know a lot about fibro yet, but boy did he know arthritis. For fibro answers he sent me to what we portlander's call "the hill", which is a huge university hospital... with a fibro dept. Although they did a firm fm dx, I did not like the university fibro dept. I felt like a number there and was treated like I was only there to get meds. I haven't gone back to first rheumy or another because until this winter my pain has been well managed. Pain has truly skyrocketed. So, now I NEED answers. And I WILL ask! He is very kind and if he can't answer he will recommend someone else who I agree on.

Yes, I am home. My trip was bitter sweet. I got some time with the two kiddos. I was able to do very little with my daughter because of the pain. She is aware now, of how fm/cfs are effecting me and cried when I left, I believe because of her new understanding that Mama really isn't making this up. I have sworn I will never make the drive again. It was not good. I called my husband on the way home to talk me through a difficult part of the drive. It's crazy what this stuff does.

Thanks everyone. I will study all the websites and have my questions ready. You all make me feel better!

Loving hugs,

LKitty

14

HI L- kitty, I have been following your discussion, and had to let you know your response was so very heart felt !!!
I don’t know a lot about arthritis, but I do understand pain, especially back pain ! I spent an hr in the car today and I couldn’t believe how bad my back hurt ! My heart goes out to you that you had to drive so far to see your daughter… Thank you for sharing , I’m going to give my daughter a hug and be so thankful she only lives 20 min away !!

Hugs & blessings
dee

15

Yes, do that. How fortunate you are. Those hugs are so therapeutic so don't you let the chance pass you by.

I was pretty stiff and very sleepy when I got home. The back and hips...oh my. I went to bed for a few hours and slept like a puppy dog. Now I'm going back to bed again.

Thanks dee. Take care of yourself.

16

Hey, let those tears flow! Did you know they release toxins? I tell people I have leaky eyes, because I cry so much! :)

Yes, here you are surrounded by people who care about you and understand what you are going through. We share information, but I find the best thing is that I am not doubted or questioned about whether or not it is real. Everyone here knows it is real. The love and care is real, too.

I'm actually glad your daughter has some idea of how fm/cfs is affecting you. Now you can teach her ways she can help. Every child wants to make mama feel better. Even bringing mama a blanket, and being told how much it helps, comforts the child. Perhaps there are other quiet things that you can do together that allows togetherness despite pain.

Meanwhile, you have survived the trip. What an awesome warrior you are!

Hugs,

Susan (Scribelle)

17

You too are a warrior. I love you Susan. Thanks for your kindness.

Laura

18

Wishing you sweet dreams and pain-free wakeup.

Hugs,

Susan (Scribelle)

19

Yes, we need to remember those blessings that surround us, such as having our daughters close by. To hug our children, no matter how old is such a comfort.

I have a son and a daughter whose hugs keep me going. We have a family term: EGBOK. It means "everything's gonna be OK". When I am overwhelmed, I go to my 6'5" son and tell him I need an EGBOK, he just holds me and says "everything's gonna be OK, everything's gonna be OK." It is such a comfort. I am blessed to have a daughter and husband who also give EGBOK's. We need them!

Hugs & EGBOK,

Susan (Scribelle)

20

Aw, now my eyes are leaking! I love you, too. We are warriors who stand together in kindness, love and strength!

Hugs,

Susan (Scribelle)