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Hi my name is mary i am 53 , i have been feeling unwell for the last couple of years , doctors kept putting it down to the menapause, my symptoms, are pains in legs ,shoulder, depression, chest infections , constipation, and fatique, had a blood test done showed signs of lupus ,doctors sent me to specialist, so for been told i have raynaurds, arthritist have had bone scan waiting for results , cant sleep at night , doctors have put me on amitriptyline , for the depression and sleep problem, i must admite this has helped with the sleeping problem but not the pain , i feel like i dont know what proble i will wake up with, and that no one is in a hurry to find out, i am so down at the moment anyone else have these symptons my doctors now want me to have another scan on my tummy area as i have really bad constipation and have been bleeding from my back passage, my doctor also want me to have camera put in both end any information on these prosedures whould be most helpfull .


thanks
 

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Hi Mary, welcome to the board. I am SO sorry you are having all this junk going on.

Let me see if I can give you some ways on how to live with lupus. First, there is not a specific blood test that will give a diagnosis of lupus. The doctor needs to tell you which test is positive. The most common is ana, anti nuclear antibody, which most sle patients do have, but there are some of us, myself included, who have never had this positive. BUT there are other antibody tests which are more specific to lupus, so don't put all those eggs in that one basket.

Arthritis is a broad term. Some patients do have joint pain and even joint damage. This diagnosis is usually given on x-ray showing the inflammation and or damage.
Something that I find helps me to sleep better is to use 4 - 1" foam pads on my bed. It relieves the stress on the primary pressure areas so I can sleep. Without them, I toss and turn all night and wake up feeling like I got worse with the pain than when I went to bed.

The amitriptyline will help you with the depression, but the side effect of it is constipation. You may need to use a stool softener until your body settles out. Try to eat yogurt, salads - summer is coming so gardens produce, and more roughage type foods. Drinking adequate water will help to soften stool too. Also, clear juices will help your gi tract to move things along.

Having a colonoscopy done will identify if you are having other problems in your intestines. It is recommended to have one at 50 yrs, so if you haven't done one yet, you may be due anyway. This is usually done by a GI doctor. Most often the person is given a level of sedation so you are not in pain or problems from it. You need to do a prep the day before to clean out your gut to have this done. One of the not too common problems that lupus can cause is to bleed from the walls of the intestine into the colon. To identify this a colonoscopy is required, so don't delay on this procedure.

If you are having lung infections, you should be seen by a pulmonologist. Lupus can affect the lungs and if not treated by this specialist you can have long term effects. If you are seen by a GP, you may need to ask for this referral.

I often recommend that new patients with lupus keep a journal of your symptoms and pain levels. Take this to your doctor appointments with you. Go through it with your doctors. If they aren't interested, I would fire that bad apple and find a new one who cares what I am going thru. I have fired my share of doctors through the years and while it is hard initially, I find it is best in the long run to have a partner at treating this condition. [I hate to break in a new doctor. I find it is stressful to me, but to have a doctor who won't listen is worse.]

Fatigue is a common companion of lupus. You need to take care of yourself at this point for if you don't you will end up worse off. If you are having this constantly, put it down in your journal and use a scale of 1-10 to rate it. If the doctor isn't interested, kick him/her to the curb and find one who will listen and care for you. Your long term health is at risk here and if you aren't your own best advocate, no one else will be either.

Last, there is a book written by Daniel Wallace, MD who has written this so the average lupus patient can survive with it. The title is "The Lupus Book", not too original, but definitely worth checking out at the library or purchasing.

You will get a lot of support here. This board has people who have dealt with sle for decades and others who are newbies as yourself. The board has people from all over the world, so you can often find at least one person who is here. No question is dumb, and please do not hesitate to ask for help. We each have found our own ways to survive this not so welcome companion.

With summer here, please take care to use sunscreen, stay out of the sun as much as possible. If you garden, do so before 10 am or after 4 pm. I find that my shade garden is a good way to be able to be out during those peak hours yet enjoy the lovely summer days. I've learned to love my ferns and other plants that let me enjoy this passion without putting myself at risk.
Early on in my journey with sle, I learned to keep a beach towel in the car. That way if I had a sun reaction, I had a way to cover the steering wheel and my arms to protect from sun.
Sally
 

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hi thanks most helpful, i did have the blood test and they came back positive is that a indicater that i have lupus
 

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Mary,
It is possible that you are pre-med but I would be asking my doctor how long does this last? If he can't give you a good answer then tell him that you do not think that is what it is. If he does then give it that time and then again go back and tell him that it is the same so it can't be that find something else.

It can be depressing feeling pain most of the time and not being able to do the things that you use to do. It often helps to have a anti-depressant added to your meds. I know that it has helped me a lot. It is hard to have limited interaction with the outside work and feel good about it. Make the most of what you can do and find away to have that be enough for you.

I hope that you feel better soon, and that you find an answer to what is going on with you.
 

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((((((Mary))))) sorry you are not doing so well and that they haven't sorted out what you have yet :( It's a difficult time being in limbo, many of us understand, having been there. The endless tests to narrow it down and rule stuff in or out :rolleyes: but it is necessary to get the right diagnosis so treatment can begin.

If it was your ANA test that was positive, it's a clue it could be something like Lupus but you can have a positive ANA test with lots of other autoimmune diseases too. If it was a low titre then some people even get it with a virus or bacterial infection for a short period of time and then it reverts to normal. I assume your doc took lots of other tests? Lupus is not diagnosed on one test alone. There are loads of bloodwork, urinalysis and most importantly clinical signs that have to be taken into consideration.

Have you had a look at the top of our Not Diagnosed section where it lists the criteria used to help diagnose Lupus? Do you fit some of those?

Also for your own peace of mind and knowledge that your doc is doing the right thing, there are lists of bloods used to monitor or diagnose Lupus posted at the top of the Tests and Procedures forum. This way you can assess whether you are getting thorough investigation.

Keep going back and keep a log of all the things that are going on between visits, that will help the doc sort it out. Also if you get any rashes then I would take a photo in case they disappear by the time you get to the doc.

Good luck and hang in there :hug: Once they sort out your bowel issues and you have the scopes then they might be able to at least start you on an anti-inflammatory. That will help some of your joint pain at least.

love
Lily
 

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Hi Mary

Bless u sorry u r in so much pain I was for months till I was hospitalised then I had the pain nurses sort me out. theres stuff out there for pain. Try a heat pack for your shoulder, If your knees r hot then wrap some ice in a towel, there r pain relieving topical cream/gels. Do go to u GP again r u seeing a rheumy.

Ive had a bronchosphy where they put a camera down u throat they did a salt water wash also to check for viruses. They spray anasthetic on u throat to numb it then put u out can be done on a day ward just have to rest for few hours after.

Take care you sound just like me.

hope u get sorted with meds soon

Dixy
 
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