Seeing a rheumy is a good idea, what you describe sounds so familar. I was an extremely active weightlifter and hockey player but then things started slowly going downhill much like in your case. Turns out that I do have several very advanced AI diseases. Not saying that you have AI but your rheumy will help sort it out. Keep in mind that these issues can be very hard to pin down sometimes.
I just got blood results back ANA was positive, sed rate is 14 and titer I 1:80. Lupus? I am having a tough time getting in to see a rheum. Do these numbers with the symptoms suggest lupus or could it be something else. They didn't tell me the pattern. Also, my only symptom now is my right ankle is painfully swollen. It is killing me! I am waiting on X-rays. Oddly, all my symptoms have been on the left side of my body. Any suggestions?
One thing about an AI osteo disease is that it will typically be symetrical. If you're not seeing this, then there maybe another source to your issues. Still, going to a good rheumy is the right move.
I just found out I have a medial malleolus fracture! My titer is homogenous. My guess is this is lupus. My gp wants to put me on low dose prednisone for 2 weeks. Worried that this may lead to another fracture. Any thoughts? Have you ever been on prednisone?
That would definitely hurt! Did you do anything acutely that may have caused it? If not, then you might want to have your doctors do a bone density test.
I'm a bit over 50 and male but I have osteoporosis with a great deal of bone degeneration throughout my body. Again, a complete surprise to me considering my exercise/activity levels throughout the years. But this is due to the extended, chronic nature of my AI diseases.
And yes, prednisone works very well but I can't use it for a variety of reason, one being that it can further reduce your bone density. Mine is already bad enough as it is. But when I do use it, the pain relief is almost immediate - within a day or so and I notice it. Sure wish I could include it in my daily treatment but oh well. So, for you, a trail period makes a lot of sense.
Ok, I went to an orthopedic and he looked at my X-rays and said my ankle isn't broken! That it looks healthy! I was floored! Today, The swelling has gone down ,but it's still sore. I have a question. With lupus do you have bilateral swelling? My knees do swell around my period, but I always attribute this to my meniscal tears. I have never hurt my ankles. The swelling was only on the one ankle. I can't figure out these strange symptoms. The main problem is I have a relatively active day and it feels like I worked out really hard! And the soreness and joint pain is in the muscles that I used a lot as a runner. The hips and knees are mainly the ones affected. Although in the past I had a stiff shoulder that radiated pain into my neck. It felt like what I would think meningitis would feel like! It resolved itself after about 6 months. Strange symptoms. I am having a complete Ana panel done. Any ideas?
Your ANA is considered negative at 1:80 and most rheumies will not consider pursuing anything below 1:160. And your SED rate is just fine.
There's nothing that indicates Lupus. Why do you suspect it?
My former martial arts instructor (7 degree black belt at the time) had ongoing joint issues, needed two hip replacements and other stuff.
My college phys-ed teacher, was a former Olympian and now is almost crippled ( since a number of years ago).
Another fellow, now in his 50s, who was a professional bodybuilder, who I know, cannot even walk without the help of a cane.
What do these people have in common?
Years of high impact training and inadequate recovery, put a huge load on their body, which caused gradual deterioration.
Of course this is not universal and there are usually more factors involved,
like genetics, lifestyle factors, viral and bacterial load etc.
We cannot view things exclusively from the narrow perspective of single causative factors.
Some of your symptoms are what I have with fibromyalgia or describe symptoms associated with it. I was diagnosed with that about a year ago but have had osteoarthritis for years so my muscles and joints hurt.
You need to see a good rheumatologist and tell them of all your symptoms and ask them to check you for fibro.
Hmm, I read your original post again and thought to ask you if you have been treated with desiccated natural thyroid instead of synthetic forms.
Also, have you ever been tested for reverse T3 (rT3)?
fT3/rT3 ratio is probably the most reliable marker for low cellular thyroid function.
Joanne and Gzsimo:
Dr. Lowe from the Fibromyalgia Research Foundation supports the premise that most fibromyalgia patients are either hypothyroid or thyroid hormone resistant.
Hope this helps.
Something happened when I changed thyroid meds. I went from the Synthroid that I had been on for 13 years. Now looking back I was probably ok on it! I got so tired at one point and thought it was my thyroid which tested ok. I think what was wrong was that I was OVER TRAINING without adequate recovery. To make matters worse, I went into overdrive when my endo put me on Tirosint same dose as synthroid. I came to find out that tirosint is more pure and you can't go on the same dose. I clearly was hyper for about 3 months. Joint pain and hair breakage. I decide to switch back to synthroid and things calmed down a bit. But, still have muscle aches,joint pain. I have been tested for Hashimotos. The pain comes and goes a few days a week. I have a few days I am ok. But, not the way I was before this. My energy is good when I don't have the aches. But when the stiffness and pain sets in. I am pooped! My tsh was hyper. My Ft3 and free t4 say I am maybe SLIGHTLY hypo. Not hypo enough to have these symptom. My tsh I very very hyper. This leads me to think if it is thyroid related maybe I need to get my tsh closer to 1. What makes me think I have Lupus is the pain and positive Ana, homogenous pattern. Fibro has crossed my mind. I thought that with fibro you shouldn't have swelling though. My swollen ankle was odd. The swelling isn't common for me though. Main problem s the stiffness and joint pain and muscle pain. What has me more concerned is that lately when this happens my appetite is poor and I am nauseated. This could also be from the NSAIDs though. Mystery! Thanks for any more ideas!
Come to think about it, I know at least 3 more people personally, with serious health issues because of overtraining and inadequate recovery.
The biological stress on the body in addition to the physical stress
eventually lead to adrenal* issues( which is the biggest concern) among other ones.
No, don't think Lupus because of the ANA which is far too low for it to be indicative at this point. Lupus is a very complex diagnosis.
I think you missed the point I tried to make earlier.
Your TSH won't matter much when you have thyroid resistance.
Thyroid resistance comes from T4 when T4 it gets converted to rT3 .
Levothyroxine (Tirosint) and Synthroid are both synthetic forms of thyroxine (T4), so should you have thyroid resistance (over and above normal levels), your thyroid meds would be the direct source!
T4 meds have a history of problems.
Most hypothyroid patients do better on natural desiccated thyroid but in lower doses when rT3 is elevated, which by the way will never be available in a generic formulation!
RT3 is a normal part of thyroid function as it converts excess T4, but when inflammation (swelling-stiffness-joint pain), low iron (often because of T4 meds causing low gastric acid and possibly also linked to your nausea),
low adrenal function* (stress), low selenium ( b'cause of low absorption) are present, then rT3 gets elevated, affecting thyroid function negatively
Despite what your labs indicate!
Do you see yourself there in what I just explained? No mystery.. and NSAIDS don't help the situation much in the long-term.
If the underlying causes remain unaddressed, rT3 remains elevated.
If the causes are removed and rT3 levels are still high, adding T3 (cytomel)
to your NDT usually helps but it takes a few weeks to figure it out and regulate it properly. Not an exact science, by any means,lol!
You're concerned about Lupus so please read the following:
When I was studying Dr.Barnes work (one of the top experts in thyroid research-diagnosis and treatment), one particular finding stayed with me.
From ALL the thousands of patients he treated for hypothyroid
(using natural desiccated thyroid ) NONE of these patients developed Lupus!!!
The ones who had been already diagnosed with Lupus, NONE developed any new signs of organ involvement, while being treated by Dr. Barnes for hypothyroid.
I understand that these concepts are often confusing and that's why I took the time to present it to you in a way that you can understand it.
Please feel free to contact me if you have any questions at all.
Thanks! You are very helpful. Yes, adrenal issues make since and I have thought of this before. The problem is I don't know of any doctor that will treat this or is knowledgeable to treat this in my area! Believe me I have a kind of researched a bit of this! The ones that do acknowledge it simply recommend a over-the-counter supplement. I have gone down that went out with little relief. I am afraid to try the natural T4. And my Endo does not believe in the consistency of it. I was okay on Synthroid before! I don't know why I'm not okay on it now. If of course that is what is wrong with me. I still think I am a bit on the hyper side. My energy through all of this has been okay, except when I am experiencing pain! Do you recommend any tests or supplements for the adrenals? Any test that insurance may cover? You know there are so many rheumatic conditions too that this may be. I considered a possible infection but my white blood cell count has been okay. No fevers that I am aware of. Premenopausal? Don't know. All I know is this started when I was burning the candle on both ends! Fibromyalgia? Thanks, Niko, for letting me bounce ideas of of you!
Well the best test I know of is the Adrenal Stress Profile from biohealth labs.
Don't attempt to treat adrenals on your own.
I have studied adrenals and I found that complex fields like epigenetics and neurology are easier to understand than adrenals (at least in the beginning)
Best doctors to treat adrenals are Functional Medicine doctors ,who have
training in Holistic Endocrinology. No insurance coverage though.
Whatever you end up doing, make sure you take only bio-identical hormones and not synthetic ones.
I can send you a self-assessment questionnaire if you're interested, in a pm. I just need to dig it out. I have a gazillion articles , reports etc. archived.
Whatever you have sounds like it's in the initial stages, since your energy levels are still OK, which means that it would not take too long to recover.
Optimizing your energy levels is key to recovery and healing.
Yes, send me some info. Do you by chance know of a decent functional medicine doctor that insurance will cover?
Hey Gzsimo, just sent you the questionnaire.
Check the Institute for Functional Medicine website and click on Patients for details.
There's a list of questions to ask Functional Medicine Practitioners,
including one about insurance and payment.
Many would work on skype, if distance is an issue.
Hope this helps.
Because Deer Velvet contains estrogens and testosterone, hormone-sensitive conditions, like breast cancer, endometriosis, estrogen dominance,etc.would get exasperated, I think long term use should be considered very carefully.
Most Doctors on the other hand , do not have the knowledge nor the time to advise you on such matters, outside the scope of their conventional treatments.
I'm familiar with Deer Velvet Antler as I knew the owner of a large deer farm
in my area , who supplied a few nutraceutical manufacturers with antlers.
We boiled fragments of the deer antlers and made tea, however, since I found out about it containing steroid hormones, I never tried it again, as I was avoiding anything that would contribute to benign prostate hyperplasia
or other related issues, caused by dihydrotestosterone in men.
There are many other safe herbal, natural anti-inflammatories for joint pain,
to my opinion, so for this reason alone, I'd say no to Deer Velvet.
Thanks. I did some research and agree. Any supplements you recommend?
Virgin organic coconut oil has anti-microbial, anti-viral, anti-parasitic, anti-fungal and anti-inflammatory properties. My top recommendation.
Boswellia is a herb that is a great anti-inflammatory and immmunomodulator.
It inhibits lipoxigenase enzymes, thus impairing the synthesis of Leukotrienes (inflammatory molecules).
The full effect may take a few weeks of supplementation.
Ensure highest quality of standardised Boswellia serrata extract, containing about 40% of Boswellia acids.
There seem to be no established guidelines for dosage, but about 500mg x2 daily with food, is consistent with most practitioners' recommendations.
Please look into this as I feel, is worthwhile and with no known side effects-this has been used in Ayurvedic Medicine for 1000s of years, with no issues, as an anti-inflammatory.
AOR has a nanoAVAILABLE Boswellia supplement, if you wish to check it out.
I think it has greater bio-avalibility.
Taking it with meals that contain fats (best is coconut oil-heated OK-, or olive oil but not heated!)
The effectiveness gets boosted up to 700% (not a typo) when taken with fats!
gtg now, but next post I'll give you some information on MSM.
Meanwhile you can do your research on the above.
For details on coconut oil you can check the coconut research website.
BTW, next week I'm delivering two speeches on the benefits of coconut oil
in my town.
OK, as promised, organic MSM (methylsulfonylmethane)-it's a mouthful lol!-
Some of its possible benefits:
--Blocks inflammations and inflammatory processes thru “Methylation.”
--Speeds up all healing processes both thru methylation and sulfur contribution
--Muscle relaxant... Chronic pain is aggravated by muscle tension.
-- Dilates blood vessels, enhancing the blood circulation & lower blood pressure.
--Enhances the activity of cortisol, a natural anti-inflammatory hormone
--Helps eliminate waste products and excess cellular fluids through “Sulfation.”
--Improves the uptake of nutrients, vitamins, and minerals in general.
--Improves all natural defense mechanisms in the body.
--Improves liver function.
--Analgesic: it blocks the transfer of pain impulses through nerve fibers (C-fibers).
There are many more things it can do for you, too many to list.
You don't need to buy the most expensive.
I buy the 5lbs horse MSM in powder form-It's fine for human consumption as it is organic and and is 99.7% pure-
I take 2 x 1 heaping teaspoon daily. I let it stay in my mouth for 5 minutes (it's bitter at first) and then wash it down with a glass of spring water. Taking it about 1h before meals is better. You should start with 1/4 teaspoon daily and increase gradually till you reach 2 x 1 teaspoons daily (heaping over 150 lbs).
Note: Some people may require even higher doses, depending the severity of the conditions, age etc., so in the event your improvement is only
minimal, I suggest you increase your intake gradually, until you experience notable results.
In the US it costs from $35.00 up + shipping and it will go a long way.
Some people who experience rapid improvement with their issues may experience a phenomenon called the Apex Effect, where they cannot remember the details of their former problem!!!
Please again, do your own research on this.
FYI I have never come across anyone who had any issues with MSM.
The only complaint was the bitter taste, but I found that within a few weeks
the taste was not offensive anymore. What would you choose if you had a choice --> 5 minutes of bitterness twice a day, or ongoing joint pain?
If you have any questions, I'm just a click away.
Thanks Niko! I will stay in touch. I will do my research. Any particular brand of Boswellia you recommend that I can pick up at my local vitamin store?
With osteoarthritis does the pain move around. For example, one week it's my neck and the next week it's my hips! Can osteoarthritis be identified on X-ray? Thanks
As I mentioned in a previous reply, AOR has a nano-available Boswellia supplement which I believe is more efficient.
It costs a bit more and you may have to order it online if you can't get it locally.
If cost is a factor, MSM powder is fairly inexpensive and with a broader therapeutic potential.
Botwellia on the other hand has a direct action on inflammatory chemicals like TNFa and Leukotrienes.
And yes, X-rays are able to identify OA, as the space between the bones
is less when cartilage is worn, uneven joints, synovial cysts formation, all typical of OA.
The migrating pain you speak of, often has to do with the feeling of the worse pain the most, when you have multiple areas of pain. As this pain decreases, the second worse pain becomes the worse, taking over temporarily till it starts decreasing. If somebody would give you a real hard kick in the butt or shin, you'd likely forget about all your other pains lol!
until the new pain subsides, right?
It also may have to do with underlying infections which are not static.
Thanks Niko! I am planning on get ting the Boswellia tomorrow. I think I am going to try to find a quality one at the vitamin shoppe. I sometimes think I have some kind of infection. I would think in the 2 years of this nightmare would have had high WBC counts or fevers. I have been nested for Lyme disease but as I understand this is difficult to diagnose. I have a md that is pretty open to things and I thought about being treated with antibioticsto see if symptoms get better. I still am concerned about lupus. I got that rash down my leg. It doesn't look like the lupus rash though. Niko, thanks for your help!
If it's a low grade infection of some sort, it's probably hiding from the immune system somewhere in the tissues after all this time and usually antibiotics won't be able to do much, specially if it is a pathogen without a cell wall,a viral agent or mycoplasma.
The antibiotics have only bactreriostatic (ability to arrest bacteria) action on these types-not bactericidal (ability to destroy bacteria).
Many of these pathogens disguise themselves in cellular membrane they take from the host cells, which makes their eradication even more challenging.
You can get tons of info form Dr. Garth Nicolson on this-he's a real nice and intelligent man , I've learnt a great deal of specifics regarding this field from him- he's part time here at medhelp and also the world's top expert in pathogenic infectious diseases like mycoplasma, babesia, bartonella , ehrichia etc. Just do search here in medhelp under his name.
If you want info on recommended antibiotic treatments, he's the authority.
You don't seem to fit the profile for Lyme's and Lupus usually has a much wider spectrum of symptoms than what you have, but having said this anything is possible, I guess.
Did you consider switching to NDT or looking further into the adrenals?
Cortisol regulates the immune cells in our gut so when cortisol is depleted those cells become dysregulated, making us more susceptible to pathogens like bacteria, yeast, and parasites.
For details look into the "GI Pathogen Screen", which is a test recommended if your cortisol levels come back low after you have the Adrenal Stress profile done.
And you're welcome!