Im 26yr old female who sees a rumatologist for postive ana and underling causes of lupus. but they havent diganosed me yet cause my blood work is also showing sarcoidosis. recently ive been having alot of neck problems, spasams stiffness along with headaches feels like a nerve pinched in my brain. Does any one else have problems with neck stiffness??
I found a really good link about Sarcoidosis that should help: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001140/
I don't have Lupus, but I do have Fibromyalgia and chronic migraine disorder, so I know how miserable overall body pain and headaches and neck aches are. Muscle spasms usually play a role in the issues I have, too. In regard to the neck stiffness, do you have a fever?
From what I just read, you need to make your home more comfortable in regards to personal care products and the things you use to clean the house. Check out a thread in the allergy community with the title: "What else contains sulfites?" There is a lot of useful information on there that can help you figure out how to start making your home environment more comfortable. For people with Fibromyalgia, it is not uncommon at all to have similar issues as folks with Sarcoidosis concerning sensitivity to the environment.
As far as the link I submitted in the beginning, I noticed that it mentions using immune suppressant drugs. That's a tough one for me to know when someone should start using it, because I don't have Lupus. I also know we're in cold and flu season.
I'm pretty sure you already checked this, because it's necessary for folks with autoimmune issues, but if no one has checked your vitamin D levels this is a must. All the more so if you start using immune suppressing drugs. Check out the Vitamin D Council's website. I'm pretty sure they even have a specific section for autoimmune, because they also have good information on Autism and on Cancer and even on overall immune support. I myself was so deficient that the virus I caught as a result really did nearly kill me. So, I speak from experience about vitamin D deficiency.
But, a word of acknowledgement: Oftentimes people with autoimmune issues also have something called vitamin D dysregulation (I recommend that you Google this) and many people with autoimmune issues also have trouble taking sufficient vitamin D to help get it up to a level that actually helps support the immune system. So, they often get stuck in a cycle where they can't get out of vitamin D deficiency because they can't take the supplements. And, too, many are like me and can't spend very much time in the sun in the summer to get the best form of free vitamin D. So, keep an eye on how you respond to vitamin D supplements. If you're able to take the recommended amount, then it should help. If you're not able to, then you can try titering the doses up in tiny increments or even alternating which days you take it. Something that is listening to your body. Some vitamin D is still better than none in regards to supporting the immune system. Especially with auto immune issues and especially in the winter when everyone in general is getting lower immunity just from not getting skin exposure to the sun in any amount that is even remotely helpful.
Other than that, can you tolerate gentle massage? Do you have a very good friend or a sister or a significant other who wouldn't mind giving you a gentle massage? You see, the gentle kind should be easy enough on someone else's hands who isn't even a trained masseuse, and it wouldn't be so harsh on you with an altered immune system. I think it should help at least somewhat with the worst of the discomfort with the sore and stiff neck.
Be very careful about using NSAID pain relievers. Overuse will only add to your misery. Overuse can actually cause rebound headaches which are worse.
What you can do for migraines that the neurologist told me is an everyday thing. (You should probably ask your doctor first, but I'm pretty sure this will be alright.) A minimum of 500 mg of magnesium, 400 mg riboflavin (vitamin B2--water soluble), standardized feverfew (one or two per day according to directions on bottle), standardized butterbur (same instruction as for feverfew), CoQ10 (must be taken with vitamin C and with food)(Make sure the vitamin C is gentle and easy on your stomach--the one that Swanson Vitamins sells that has rose hips included is easy to use and it's very, very affordable along with being very, very gentle on the stomach), Vitamin B Complex (Now is a very tolerable brand--not all brands are tolerable). These are things that my conventional neurologist definitely suggests--in addition to either MigraFew (can be bought in your local supplement store) or MigraClear (Biogenesis brand). This integrative approach should be acceptable by your doctor, even if your doctor is a conventional doctor. And, at least these are nutrients that people need anyway.
Thnks that was very helpful, I see a nurologist he gave me mag before but my insurance wouldnt cover it..and is that why I am so sensitive to touch cause the altered system I can barely stand for anyone to touch me. As far as my vitamin level s I this think their ok besides my B12 defiancy. Sorey
Thnks that was very helpful, I see a nurologist he gave me mag before but my insurance wouldnt cover it..and is that why I am so sensitive to touch cause the altered system I can barely stand for anyone to touch me. As far as my vitamin level s I this think their ok besides my B12 defiancy. Sorry about the spelling.
According to the website I referred you to, those are the reasons for being so ultra sensitive to everything including being touched. I don't have Lupus, but I do have Fibromyalgia and chronic migraine disorder and Multiple Chemical Sensitivity. I've learned some tips and tricks along the way that use non-toxic everyday items that take care of the everyday household cleaning and have found many helpful non-toxic personal care products that I know will help you be more comfortable in your home environment. The non-toxic household cleaning items actually end up saving a whole lot of money, too. I'm low-income, too. Even if you can't get everything all in one paycheck to start with, you can get most of the items I know about in one shopping trip for the household cleaning and get the rest the next go around. Then, slowly build on that with the personal care products. The great thing about the items I found is that they last. So, even with initial cost, they still save a lot of money, too.
A good website for getting supplements at an affordable price yourself is Swansons Vitamins. Just Google with those words and you'll find it. Also, magnesium citrate is a better and more usable form of magnesium than the magnesium oxate that the prescription is written for. I've had that form as a prescription myself. All you really have to do is take the same amount in citrate form that you were prescribed in the oxate form. The same thing is true about calcium, too, when you're able to move on to using calcium. Calcium citrate is the better form with that one, too.
Unless or until the doctor says you have to have B12 as a shot or an IV, if you can get a sub lingual form of B12 or a B12 oral spray. Both of these forms are superior and more usable to the body than taking a strictly oral form of B12. Probably not as useful as the shot or the IV, but definitely better than not helping yourself out here. Oh, and Mercola says the oral spray form is better because it absorbs better. He also says micro mist is best. This is one we need to get into the blood stream or we get no benefit from supplementing it at all.
Your normal vitamin levels being okay is wonderful. The supplements I mentioned, though, do help with the migraines. and they are water soluble. The vitamin B 100 complex does contain SOME B vitamins that are not water soluble, but you only take that one once a day, so there is no problem with the few that aren't water soluble. And, these are actually good supplements that people without health issues can and should take.
And, no, your insurance won't cover any of the things I mentioned, which is certainly too bad. But, the website I mentioned is definitely a helpful resource for getting the things that the neurologist would want you to use. You can actually get things for less money than what the discount brick and mortar supplement store can offer. What I do is order several things at once when I can, then I can get these things and only pay for the low cost shipping the one time. And, these guys offer great sales and discounts often. When you can start getting these things, you will notice that these things last. Most of the bottles are more than enough for just one month.
I get the riboflavin that is only 100 mg and just take four of them. The only thing that taking that much vitamin B2 (riboflavin) is going to do is make your urine bright yellow, so it's not going to harm you. I take that much because of the migraines and that's what the neurologist told me that has been proven to help with migraine prevention. And, this is coming from a conventional minded doctor. Often there are great BOGO sales with the company that I mentioned, and the riboflavin is often included. I take advantage of these sales when I can afford to, so that I can manage to continually have the supplies I need.
thanks your info helped alot and yes i had the B12 injections for a yr but my levels became stable enough for oral. When I go back and see my doc im going to ask him to more vitamam I think that would help alot and im gong to look up those chemicals i think that would help.
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