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florie
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Hi all,

Yesterday was not a good day for me.
My body felt like I was carrying someone on my back. My legs hurt,knees,lower back and neck,with feet numbness. Luckily I had a chiropractor appt. To get to the bottom of this, he adjusted my hip,neck, and lower back.
I brought in food samples, and found out that i am allergic to wheat. No breads for me :sad: also allergic to mayo. He asked me to go rinse my mouth from the mayo. I couldn't walk straight to the water fountain, it was like i was drunk.( No adjustments were made yet). I was terrified.

His questions were to me,how long from you last appt. did you feel well. My answer a few days. His question, was there anything different that i did or any new meds. taken. My answer, I vacuumed the house and it was a heavy vacc i used. I also used a heating pad for my neck and back pain.
He replied that he didn't want me using dry heat for that's like sitting in the sun with my lupus,said to use moist heat. As for the vacuum he said i should wear a belt. I told him we solved that problem and got a really light weight one.
I am taking fish oil (salmon) 2x's a day. And 3 other vitamins. He said my bones are so fragile he can't do what he wants to because he is afraid he may break my bones. I see him once a week.

I am giving this one week,staying away from bread(flour,wheat) and taking the vitamins. Has anyone experienced these symtoms? Does anyone think i need to see a neurologist?
I don't want to be crippled, I am so scared. Feeling better today.
Florie
 

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Hi Florie,

Sorry you are feeling unwell.

I don't know what to make of your experience with the chiropractor. Maybe my suspicions are unfounded, but it sounds pretty wierd.

Did he take x-rays?
Have you had a dexa scan?
Have you had blood tests and skin patch testing for allergies?

Has a real doctor ever given you a diagnosis for osteoporosis?

Unless you've had tests proven to be effective in finding these problems, I would take this person's 'diagnosis' with a grain of salt. Anyone can say anything, but without good evidence to back it up, there is no reason to believe is it true. The only positive thing I would say is at least he didn't risk damaging you pernamently by doing spinal manipulation:(.

I think you should see your rheumatologist, and ask the rheumy about your symptoms and let him refer you to neuro if he thinks it is warranted.

good luck

X C X
 

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Hi Florie,

:hug: I hope you can find some relief for your pain.

I have never heard of a chiropractor doing allergy testing. How were these tests done? What type of reactions did you have?

It won't hurt for you to discontinue the offending items as long as you are eating well and getting the nutrients you need. If you do decide to reintroduce the foods back into your diet do one first then wait a few weeks before you introduce another one. Try replacing the mayo with plain yogurt.

Some doctors do recommend moist heat over dry heat. The theory is the heat is dispersed to the body more quickly. I have never noticed a difference and find dry heat less of a hassle. You might also try periods of using ice.

Take care,
Lazylegs
 

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Hi Florie,

I can see why you would be scared. I agree with Cath. See your Rhuemy, and let him refer you to the proper specialist..to sort out, what is going on with you.

I am very sorry, your feeling so terrible.:(

Please stay in touch with us, and let us know how your doing?

Love,
Sandy
 

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I have to say that I am suspicious of this chiropractor too and alarm bells are sounding for me based on what you have written. I would feel much more comfortable if you see your rheumy and/or a neurologist should your symptoms continue.

Chiropractors *can* do more harm than good. Manipulations have been thought to cause strokes sometimes, among other problems. I would rather see a good massage therapist for symptomatic relief and relaxation than a chiropractor. I do have a few friends that swear by them... but this guy sounds a little over the top diagnosing you with certain food allergies without testing? And probably saying you have weak bones without proof/DEXA scan? Be careful...
 

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I would talk to your Rheumy.

I am not a fan of chiropractors personally.

I hope it gets sorted out and you get feeling better.:wink2:
 

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Hi Florie

I also agree that you need to see your rheumy to discuss what is happening. The fact that you felt drunk while walking is worrying. Like Cath, I would want to have xray proof of how fragile my bones were before I believed it.

Several years ago I had excrutiating pain in my back area and was waiting on a hospital appointment for an ultra sound. As I had been through a few other investigations and nothing had been discovered, a friend recommended me to a chiropractor.

As it turned out I had my ultra sound appointment on the same day as the chiropractor appointment but decided to keep both appolintments. First I headed to the chiro and she examined me and said I had a spinal misalignment. I wasnt very convinced because the pain felt more organ related so I asked her if it could be referred pain from something else going on. She reassured me that it wasnt and proceeded to do some manipulation which was very painful. She said I would need several sessions with her.

I left and went directly to the hospital for my ultra sound and they discovered an abundance of gallstones in my gallbladder which was causing the pain. Long story short - I had the gall bladder removed and never went back to the chiro.

Please let us know how you are

Joan:rose:
 

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florie
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Discussion Starter #8
questions and answers appreciated

Hi and thank you all for your comments.

I am feeling much better today. :)

I am giving this chiropractor a chance because i do feel he know's what he's doing.

He is a chiropractor/kinesiologist/nutritionist
Diplomate of the international college of applied kinesiology


When he does the food allergy test it is done like this. He places a piece of food i bring in. Placing it on my tongue. I then raise my arm as he gives the food a chance for the brain to sense it. With my left arm up elbow straight he has me resist againt his hand. If my arm does not fall down meaning i have strength in it then i am not allergic to it.

He has made neck adjustments due to my TMJ. Remarkably has helped leaving me pain free. Also showed me how to massage the gum area, just past the last tooth in my upper jaw.

He feels i am sensitive to chemicals that are put in my body. Like my allergic reaction to Leviquinn. He placed that on my tongue and i could not resist at all. Knowing i was allergic to it anyway i just wanted to test it out.

Not many of you believe in Chiropractors but he is not my only source of help. I am still seeing a Rhuemy that i may push up my appt.My gp is changed all the time so i have to go over my history when i go in for a medical problem. This is the same GP that I had to ask her to do a urine test. She asked me why? Is there a problem? Turns out i had a urinary trac infec.
She did bloods but said they came out fine.If anything I do not trust what she says or does.Not happy with the GP. :sad:

If my joints continue to hurt and my balance is still not better then i think it's time for my rhuemy to step in and get bloods done. (he took me off the plag last april.)
My balance is also due to that inner-ear infection. My left ear, in which i had a cat scan done and showed fluid in the ear canal and traveling to the sinus area. Lately i am just falling apart and my worst enemy is antibiotic's.
So by trial or era one way or another i have to give all a try.

My question is, can you have lupus and sjogens that will cripple you? Cause you to have joint aches,and clicking of the joints?

So my friends, i turn to all of you with these symptoms and questions to compare your experience's of what your opinion is with open honestly.And i appreciate your feed back's. You are always here for me.
hugs, florie:rose:



:grhug: More reply's anyone...
 

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I have joint aches and cracking/popping joints, and it can be crippling sometimes. So yes, I think lupus and Sjorgen's can do that to a person.

I really don't think a chiropractor can cure lupus and/or Sjorgen's either. I'm doubtful that he can even treat the pain it brings about.

The "testing" he did for allergies is not in any way scientific. Probably completely inaccurate to boot. You should see a board certified allergist to determine if you have any food or environmental allergies. I can understand trying to go gluten free for a while and seeing if that helps with any of your symptoms though - it's worth a try because it does help some people... and is unlikely to do harm.

I forgot you were taken off Plaquenil - and so now you aren't on any disease modifying medication? It's no wonder you're experiencing an uptick in your symptoms. I would definitely try to get into your rheumy or get a second opinion rheumy too. Keep trying to find a good GP. They are out there. ;)
 

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Hi Florie,

I'm sorry to hear you're in so much pain at the moment.... :(

Please, please be careful of this chiropractor. I understand that you know something is wrong with you and that having a regular doc dismiss your pain and your worries because your blood tests are ok may be deeply upsetting and might make you put your faith and your trust in people practicing alternative medicine and I am not in any way judging you or anyone who chooses to go to chiropractors or herbologists or gurus whilst seeking pain relief and a chance to go back to their old self.

BUT: Before I was diagnosed with lupus and right after my first optic neuritis episode when the focus was on MS and docs wanted me to be admitted into hospital for spinal taps and MRIs and a bunch of other things I felt I should not even know of at 20 I sat down with my mum one evening and convinced her to take me to this alternative doctor who has an excellent reputation here. Appointments with him were really hard to make, the waiting list to see him was about 6-7 months long but amazingly so a family friend had made an appointment for that week that she was forced to cancel due to a work thing and so I went in her place. I was ecstatic. I met with the doctor, who was an actual internist too, on top of his "alternative" qualifications and he stroke me as confident, someone who knew exactly what he was talking about, someone who had seen what I had before and cured it with great success and I guess basically someone I could put my fears and trust in and that could listen and help.

He did this biofield testing with metal instruments he placed under my feet and with electrodes on my ears and palms (and very correctly "saw" that I had had asthma problems as a child), he did food allergy testing in exactly the way you describe and told me I was allergic to gluten, red meat, honey, tomatoes, anything fried, copper, wool and a bunch of other things. He sent me to his wife for further food allergy testing with crystals where I was told I was allergic to about 70 other foods, gave me a leaflet on the blood type diet and of course told me that I had multiple chemical sensitivities (if that sounds at all familiar to you by now) and that I had severe toxin accumulation in my body from two courses of antibiotics I had been given when I was four years old for tonsilitis etc etc. I have TMJ too, major troubles with my teeth from it, and so he did this laser treatment with a red laser beam being pointed at my cheek for about 2-3 minutes. I was convinced the treatment had cured my TMJ (until I broke a tooth in my sleep a couple of months later and finally went to get a mouthguard from the dentist). Most importantly he gave me an endless list of supplements and meds to take and, knowing what I know today, I am deeply embarassed to admit I took them all religiously.

I drank water filled with a powder meant to cleanse my liver of all the toxins (had to drink 4 or more liters of this a day), took magnesium pills, vitamin b12 injections, vitamin c injections, a tonic herbal supplement and a bunch of herbs either in pills or teas that I've never even heard of and don't really want to hear of again. I felt ok for a while, I really did. But by the second week of all this I started getting incredibly strong tummy pains and couldn't eat at all as even the sight of food made me nauseous. My mum, my family, my regular internist, they all wanted me to stop but I was so petrified of the possibility of being chronically ill and of the possibility of being "crippled" as you say that I was willing to go through any kind of torture if it meant having a shot at being healthy once more. Looking back at it, I think it's normal human behaviour. Maybe we have to go through a period of denial and disbelief to get to acceptance of who we are and what we have. At least I know I did.

To end my alternative medicine tale, I was admitted into hospital pretty soon after the tummy pains started and gave a list of everything I was taking to my regular doctors. They somehow managed to be incredibly understanding of what I'd done and sat down with me for hours explaining the nature of the immune system and immune system disorders and why and how these things can't be cured at the moment but that they can be controlled.

I have a disability from lupus and aps. That is a fact. No alternative medicine in the world could have changed that. That is also a fact. It's just how my disease progressed and how it responded or didn't respond to meds. However my lupus, my aps they're under excellent control at the moment and I can live a perfectly normal life without pains and fatigue and flares. For as long as this bout of good health lasts of course. I think one of the hardest things to realize is that lupus is chronic, that it will be there by your side forever no matter what you do to get rid of it. I hated lupus and aps for some time and don't get me wrong I still get really wildly mad at both disorders when they're causing me troubles, but I like to think lupus and aps are part of who I am if that makes sense. That doesn't mean I have to like them all the time or be grateful for them or anything (quite the opposite at times actually), but it does mean that I've accepted I have two chronic incurable diseases. They can be managed and one's quality of life with them can be good but unfortunately I cannot will them away no matter how hard I try.

I went back to that alternative doctor of mine a couple of years ago on steroids, plaquenil and cellcept as I wanted to see if, when I wasn't so desperate to believe in him, I would see the things he did a little bit differently. I went through the biofield testing again and he told me that the treatments I'd been on had increased my toxic load and when I questioned this toxic load theory a bit he had the audacity to tell me that "people have the ilnesses the deserve" (how I didn't punch him at that I'll never know....! :lol: ) and then re-did the allergy testing. It was then that I noticed that when he wanted something to be deemed an allergen for me, (i.e. when he tried pushing my arm down and I had to resist etc etc) he would place two fingers (instead of the one he placed on substances he didn't think were allergens) on my arm, one further back than the other one and push with a lot more force.

I'm not saying that going off wheat and mayo will necessarily hurt you, but please be careful of this chiropractor. These peoples' statements regarding your health, what you should eat and what supplements you should take tend to escalate slowly, so just please be careful of what comes next. :worried:

Now your GP situation doesn't sound ideal at all. Is there another GP practice you can go to? Somewhere where you'll be able to see the same GP each time? It might be an idea to look for another GP. In the meantime, if you have a rheumatologist you trust I think you should go back to him, sit down with him and have a serious discussion about your joint pain and how to get better disease control. Maybe you can even discuss going back on plaquenil with your rheumy. I understand that the chiropractor is your only source of help for the moment and I do think that is a big part of the problem; having medical sources of help like a GP and/or rheumatologist you trust will help you getter much better disease control so that your pains and joints can improve as much as possible.

Do let us know how you're getting on! :)

:flowery:

Zoi
 

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My experience with Homeopath/kinesiologist/GP

Hi Florie,

Amen to what everyone is saying. I am giggling at the stories. You know none of us is embarrassed, nor ever should be, for the choices we make when we are desperate and conventional medicine is letting us down. This is my story. I was told that there was this fantastic doctor who was a GP but also a homeopath and kinesiologist. i thought, what harm can it do and was climbing every tree in the orchard to get an answer. He performed the exact tests that you are describing and told me that this was convincing evidence of a candida infestation, and he could fix it with some diet adjustments and a course of antifungals. well, i followed his advice to the letter and 4 courses of anti fungals later (it was a very stubborn infestation, it seems!) he finally accused me of cheating on the diet and that his tests don't lie. I took great pleasure in telling him when I had got a lupus diagnosis and that he was incompetant. he insisted that just because I have lupus doesn't mean I didn't have candida. I agreed but said that he should consider carefully how proud he should be about how wide his range of vision is when diagnosing. i mean, what is the point of curing candida (for which i am told there is a simple blood test) if you miss lupus? And 4 courses of anti fungals? In fact, I have some simple food intolerances, not candida. My GP laughed out loud when i told him this story and said that this particular doctor was known by all the other doctors as "Dr Candida". What can I say?

never stop searching for answers, but the moderators have the right advice. There is very little evidence that alternative medicines do anything other than make lupus worse.

I wish you all the best in your search.

love and hugs
Rose
 

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Hi there,
I just wanted to add that I'd also be wary of anyone calling themselves a nutritionist. In the UK at least, you can say you're a nutritionist without any qualifications at all - if you want to see someone with actual definate qualifications, go to a dietitian.
:hehe:
 

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Hi Florie

I totally agree with what everyone is saying. You really need to see either your gp or rheumy to discuss your symptoms.

I have had similar experiences to zoi and rose. When I was first tested for lupus I was extremely ill and in a vulnerable state of mind. I was tired of being ill, frightened and in denial. I consulted a homeopath who told me what I wanted to hear, that the medicines I was on were harming me and that if I just took these few tablets I would be cured. All without seeing me. The upshot is that she didint understand lupus and so gave me things to stimulate my immune system. I ended up in hospital with what I later found out out to be vasculitis/kidney disease. I couldnt even lift my head up or open my eyes and my bp was 80/50. I later discovered she had given me things contraindicated to people with immune system problems. I am not saying she caused the illness but I wasnt cured!!!

Florie, please be careful.

Deb
 

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What Zoi said is SOOO true!
1] If I can help you with what to avoid in dealing with a wheat/gluten intolerance, you can either post here or do a PM. I have lived on a wheat/gluten free diet now for 35 years. I think I have this down.

2] For your chiropractor to say to avoid bread and mayo does not even come close to what contains wheat/gluten in the foods. There are SO many more to avoid.

3] With the unsteady balance issues.....you need a rheumy visit and most likely some phys therapy to be able to work thru all this. Do NOT mix the chiro and physical therapy at the same time. They can end up contradicting each other in the treatments they use. If you are seeing both, make sure EACH one knows about the other. This is very important. You can end up worse off than when you started if they don't know about the other one.

4] I agree with Maia that a massage therapist would be more my choice than using chiro right now.
I find I get best results using massage therapist. BUT my therapist did a lot of research on sle before I saw her for the first visit. She keeps my body working and the muscles and joints in gear. She is very careful to not stimulate immune system areas. We work to calm that down, not stimulate it. It does really help tho to use the lymph system drainage to reduce edema in my legs.

*** Run it by your rheumy before you do any therapy. I can't stress how important it is to have ALL your doctors on the same page.***

Just an aside......I can't figure out why your chiro doctor said to avoid mayonnaise. There are a few brands which use a wheat derivative as a stabilizer, but not all brands are unsafe. (for me that is)
If you are trying to avoid wheat, be careful of foods containing: "modified food starch" as this can be either wheat, corn, or potato starch. Unless you know that a certain food uses a safe starch, then you need to avoid those that have "modified food starch".
If you are to avoid gluten, then you are wise to avoid these as well as they contain a by-line called: gliadin; oats, barley, rye, quinoa, for some: tapioca and millet
safe starches: corn, rice, potato

As I said, if you have any questions about what is safe vs not.......I'll be glad to share what I have learned over the years.
Sally
 
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