Pain in the neck

[lyndsaylee]

I have psoriatic arthritis and occasionally get pain in my neck. Usually doing some McKenzie exercises help, but recently it almost seems to make it worse. The pain is bad in the morning, loosens up a bit during the day,Then towards evening, it starts tightening up again and sometimes I can barely move the neck. I wake several times in the night with pain and have to readjust myself with pillows all around me,supporting my neck and arms. I have pain in my right arm that varies with the pain in the neck. I’m sure it’s connected. I have been tested for the HLA-B27 marker but it was negative. Is there anyone here that has AS but tested negative? Can a person have AS without testing positive? My last x-rays showed that the disk disease was getting worse. However, PsA, osteoporosis (which I also have) and AS can all cause degenerated disks, right? How can I know what condition I’m actually dealing with here? Would it make a difference in how I need to treat it? Anyone else have osteoporosis? How do you balance taking mino with calcium foods or supplements? I realize I’ve asked a lot of different questions. I’m just not sure what to do and know I need to do something. Warm baths feel good but aren’t really making it better. The NSAID I’m taking (etodolac) doesn’t get me through the night. Feedback anyone?

[Maz]

@lyndsaylee wrote:

I have been tested for the HLA-B27 marker but it was negative. Is there anyone here that has AS but tested negative? Can a person have AS without testing positive?

My last x-rays showed that the disk disease was getting worse. However, PsA, osteoporosis (which I also have) and AS can all cause degenerated disks, right?

How can I know what condition I’m actually dealing with here? Would it make a difference in how I need to treat it?

Anyone else have osteoporosis? How do you balance taking mino with calcium foods or supplements?

Hi LindsayLee,

Are you still on your minocycline or did you take a break from your AP? See from your sig line that you’ve been on mino 100mg daily since 2008? Is that still right? Just wondering, because if so it may be time to get some protocol tweaking going and maybe looking into a combination protocol. Are you taking any dietary measures? e.g. Starch, gluten, dairy, nightshades elimination?

Yes, it is possible to test negative for the HLA B27 genetic haplotype and still have AS. These tests can confirm disease, but can’t rule it out. I think Dragonslayer (John) can probably describe this much better than me with accurate stats, so if he doesn’t see your post, perhaps you could PM him? You’ll find his journey to remission in the personal progress threads here:

viewtopic.php?f=3&t=872

It’s very possible to have overlapping rheumatic presentations. My MIL in UK has both AS and PsA…PsA, as you possibly already know is classed as a spondylarthritide and either can cause disc degeneration.

While a definitive diagnosis isn’t the be-all-and-end-all, because if one adheres to infectious theory, then treating with anti-microbials is the way to go as Dr. Brown would have done, along with various supportive adjuncts, such as diet and detox. However, yes, it can make a difference how one treats rheumatic diseases with various antibiotic protocols. Different organisms require different anti-microbials. As John can explain, klebsiella pneumoniae seems to be the offending organism in many cases, though there are other organisms that can contribute to the situation, like the chlamydias, mycos and the Lyme mix of infections, for instance. When minocycline alone isn’t helping (usually by the 6 to 8 month mark some improvement is evident, but in your case 4.5 years is a long time), this is when it’s time to look at possibly introducing additional abx in combination.

Have you been over to the http://www.kickas.org site to browse the materials over there?

A Friend has posted extensively on osteoporosis and acidosis…the leaching of calcium from bones to maintain pH homeostasis in the body. In this sort of scenario, just supplementing with calcium may not be advisable. Calcium needs to be combined in appropriate ratio with magnesium (2:1 calcium to magnesium and sometimes a greater emphasis is needed on magnesium) and Vit D. Keeping all minerals well away from tetracycline doses by at least 2 hours either side is important to ensure proper absorption of the antibiotic, because tetras are so chelative that they will bind to minerals in the gut and render the abx useless otherwise. Supplementing with calcium on its own can, according to some literature that I’ve come across, actually be detrimental to health (but would encourage you to research this for yourself), contributing to arteriosclerosis, bone spurs, kidney and gall stones, for instance, because it’s not readily absorbed as a standalone supplement. I’ve never supplemented with calcium, just magnesium, but I think Lynnie has used a supplement that comes in a synergistic combination.

As to balancing meds and supps, yup…it’s a chore and no doubt about it. It can be done, however, and some folks will draw up their own chart systems with times in the day for taking various meds and supps, spaced with meals, etc. The little plastic pill cases with compartments that can be bought from pharmacies in various sizes and labeled with days/times can really help with this, as you can pre-load the compartments once a week and it then becomes less of a daily chore and simple to check the box to see what needs to be taken each day and to carry around in a pocketbook or handbag.

Hope some of these leads will help you, Lindsaylee. If you’re not working with an experienced AP doc and want a referral list, let us know or write to apdoctors@roadback.org and Diana will respond. Some states are better off than others in this regard and sometimes a bit of travel is necessary. Sometimes working with an experienced doctor, or just going for a really comprehensive initial work-up with one, such as Dr. F, the rheumy in CA, can make a good deal of difference.

Happy new year to you! 🙂

[A Friend]

@lyndsaylee wrote:

I have psoriatic arthritis and occasionally get pain in my neck. Usually doing some McKenzie exercises help, but recently it almost seems to make it worse. The pain is bad in the morning, loosens up a bit during the day,Then towards evening, it starts tightening up again and sometimes I can barely move the neck. I wake several times in the night with pain and have to readjust myself with pillows all around me,supporting my neck and arms. I have pain in my right arm that varies with the pain in the neck. I’m sure it’s connected. I have been tested for the HLA-B27 marker but it was negative. Is there anyone here that has AS but tested negative? Can a person have AS without testing positive? My last x-rays showed that the disk disease was getting worse. However, PsA, osteoporosis (which I also have) and AS can all cause degenerated disks, right? How can I know what condition I’m actually dealing with here? Would it make a difference in how I need to treat it? Anyone else have osteoporosis? How do you balance taking mino with calcium foods or supplements? I realize I’ve asked a lot of different questions. I’m just not sure what to do and know I need to do something. Warm baths feel good but aren’t really making it better. The NSAID I’m taking (etodolac) doesn’t get me through the night. Feedback anyone?

Lyndsaylee,
I don’t want to give you more to worry about, but am wondering if you’ve thought about seeing a chiropractor for a bit of diagnostics on the alignment of your head/neck/spine, etc.? My bone density had always been in the high range of normal, so I thought my bones and alignment were probably fine, as my posture is good and I had no pain. As it turned out, this was not so.
I’d only been to a chiropractor once (about 7 or 8 years ago when I reached across and picked up something heavy, pulling something in my back; and the chiropractor had been very helpful. About a year ago, I suddenly noticed after showering it looked like my right hip was different. I hadn’t had any pain to alert me anything was wrong, but it was so obvious, I knew I needed to see someone about it. I didn’t want to go to an orthopedist, etc. and have them tell me I needed hip surgery, etc. I must confess I’m a bit leary about most doctors. So, I decided since I had been pleased with and trusted the chiropractor I mentioned, I would see him and let him assess what was going on.

I did, and he knew right away what was wrong, and said we needed an x-ray, which he did quickly in his office. I was in shock to learn I had developed scoliosis — and my having had bone density in the high range of normal. I’m sure the several recent years of pain from the acidosis had caused/allowed the scoliosis problem to develop. I’ll be happy to discuss other things with you if you have questions. But, for the pain we both have had, when our neck and spine get out of alignment, this can cause discomfort and pain; and I believe having a really good chiropractor restore alignment is needed. The simple procedures the chiropractor did recently when I developed neck pain worked well and quickly, feeling much better even after the first visit. I saw him 3 times, and it has been two or three weeks, and it is still feeling ok.

Hope you find some relief soon,
AF

[lyndsaylee]

Ugh! I’ve been working on a post for the last 45 minutes and just lost it. Don’t have the energy to start over right now. Just wanted to say thanks to Maz and Friend for responding. I have been reading up on all you suggested. I even read John’s “long boring AS story” but it’s not boring at all. I have some of the same symptoms. Will have to read up more on his diet, etc. Yes, been off mino for a while. I started developing a problem that made me think I needed to take a break. I know I need to start back up – but just not doing it for some reason. I felt a lot better when on it. Initially it took a good long while to get results. I started feeling better when I upped the dose to twice a day every day.

Don’t have money for a chiropractor. But maybe I should try and see one just to get a better diagnosis and extent of damage. (used to see one years ago.) My neck is in real sorry shape. The last two days, as evening approached, I could barely move my head. My right arm hurt down to the elbow area. I upped the NSAID just to get relief. I worry about surgery. I wonder if I let it get too bad. Can badly damaged vertebrae be healed? Or does there come a time when surgery is the only possible help?

Well, I’m thinking I’ll do a little more research into John’s (Dragonslayer) diet. Anyone know how long do you have to be on the starchless diet to experience results? Is it feasible to be on a diet like this if I have to work? (I have to work. I ask because some diets require more preparation. Like, back in the day, I ate macrobiotically for a while, and it seemed like I was in the kitchen all day!

Will take this up tomorrow. Thanks again…
Laura

[A Friend]

@lyndsaylee wrote:

Ugh! I’ve been working on a post for the last 45 minutes and just lost it. Don’t have the energy to start over right now. Just wanted to say thanks to Maz and Friend for responding. I have been reading up on all you suggested. I even read John’s “long boring AS story” but it’s not boring at all. I have some of the same symptoms. Will have to read up more on his diet, etc. Yes, been off mino for a while. I started developing a problem that made me think I needed to take a break. I know I need to start back up – but just not doing it for some reason. I felt a lot better when on it. Initially it took a good long while to get results. I started feeling better when I upped the dose to twice a day every day.

Don’t have money for a chiropractor. But maybe I should try and see one just to get a better diagnosis and extent of damage. (used to see one years ago.) My neck is in real sorry shape. The last two days, as evening approached, I could barely move my head. My right arm hurt down to the elbow area. I upped the NSAID just to get relief. I worry about surgery. I wonder if I let it get too bad. Can badly damaged vertebrae be healed? Or does there come a time when surgery is the only possible help?

Well, I’m thinking I’ll do a little more research into John’s (Dragonslayer) diet. Anyone know how long do you have to be on the starchless diet to experience results? Is it feasible to be on a diet like this if I have to work? (I have to work. I ask because some diets require more preparation. Like, back in the day, I ate macrobiotically for a while, and it seemed like I was in the kitchen all day!

Will take this up tomorrow. Thanks again…
Laura

Laura,
Hope by now things are much, much better for you. I just found a really interesting and informational link that I wanted to post on our RBF BB on this subject of acidosis and bone loss, etc., so people who are looking for information might find it. It is http://biomedx.com/bones/page13.html
Best to you,
AF

[Anonymous]

My two cents:

My wife has been struggling with neck pain for quite some time, she builds up tension in her upper back muscles and that gives her neck pain + headaches.

She kept changing pillows in order to have some decent sleep. One chiropratitionner said that it isn’t helpful to change pillows all the time since the neck needs to readjust accordingly every time you switch, even if you temporarily feel better. It’s best if you keep the same pillow for at least two weeks and see what happens, change if it doesn’t work after these two weeks. My wife’s current experience with neck pain is this: she bought a 75$ ergonomic pillow that didn’t feel confortable at first, but after 2-3 days she began to sleep better and the neck pain got less severe.

Hope this helps a bit.

[Author]

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