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Discussion Starter · #1 ·
For the past few days i have had pains in my stomach and back also bloating, i went to see Gp on Friday she put me on mintec. As i am not on any meds at the moment because i do not see rhuemy till end of August i asked her if it is linked to lupus she say's she does not think so.
Does anyone else get this problem with their stomach or is it just because of going through the menopause.
Does plaquenil help the bloating when you have been on it for a while or is it only for the joint pain,i am just curious.
Thanks for all the support you have given me in the past.
 

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Hello Sandy,

I'm sorry to hear you've been feeling like that. It is very uncomfortable.

I'm not sure if I would say it is a lupus thing but I think one could say it can tie in.

I get bloating and my whole digestive system slows considerably when I'm not feeling good. As my flares tend to go on for ages, that's not very nice. There seems to be an element of gastroparesis linked to my problems as I have week muscles everywhere (so why not weak stomach muscles). For my part, diet has helped considerably but it's quite an experimet to find what does help.

There are also a lot of people who have lupus that get Irritable Bowel Syndrome and I think (though I may be wrong) that it can even be an element in diagnosis. I believe that's what mintec is prescribed for.

I don't think the plaquenil will help at all. You should maybe see when this is happening. Is it all the time? Does it tie in with flares? Does your digestive system seem to have slowed?

I think that most people find that the most effective help is diet. It took me a long time to really find what helped and also a long time to change habits and do something constructive about it.

bye for now,
Katharine
 

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Discussion Starter · #3 ·
Hi katherine

Thanks for replying, the doctor did say it could be irritable bowel syndrome but she also sent a urine sample as she is concerned about the past infections i have had blood in urine etc.
I do not know if i am in aflare at the moment but my wrists are very sore, you know what it is today wrists,yesterday elbows, the other day it was legs.
Sorry to moan but i am a bit sick of being in pain.
Anyway thanks for responding it is nice that people can cybertalk,as most of my freinds have not shown their faces since i was diagnosed.
Thanks once again hugs from sandy
 

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Hi,

If it is lupus....doc will probably but you on steriods first the intoduce you to plaq. There are quite a few peole on here with IBS. Lupus is not easy to DX. We all have so many conflicting symtoms

Ask doc to if they could run a lupus panel (blood work) to get the ball rolling. Read info on this site and on web. Do not DX your self. Lupus is hard to DX because it is the great imitator. You can rant here. We have all been there and understand.
You said that your friends have not shown there faces since you were DX'd. What are you referring to.

When people get sick you definitly find out wh your friends are. Try to be positive...Yes I know it is hard.

Join us in chat

Elaine
 

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I too am a lupus individual with IBS (or so they say until the abdominal CT comes back). I have severe abdominal pains whenever I eat. I end up going to the restroom until my body expels what I had just eaten. I do not absorb nutrients because I cannot hold it long enough. I hope this is not the same you have because I hate it.
Yes, abdominal pains are related to Lupus and so is stress. Don't let anyone tell you different. You may have a mixture of both which makes your stomach work extra hard. I hope that you and I find out how to handle this.
 

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Discussion Starter · #6 ·
elaine

dudley;517719 said:
Hi,

If it is lupus....doc will probably but you on steriods first the intoduce you to plaq. There are quite a few peole on here with IBS. Lupus is not easy to DX. We all have so many conflicting symtoms

Ask doc to if they could run a lupus panel (blood work) to get the ball rolling. Read info on this site and on web. Do not DX your self. Lupus is hard to DX because it is the great imitator. You can rant here. We have all been there and understand.
You said that your friends have not shown there faces since you were DX'd. What are you referring to.

When people get sick you definitly find out wh your friends are. Try to be positive...Yes I know it is hard.

Join us in chat

Elaine
thanks for the advice elaine, as i say my freinds of 25 years make excuses now about coming they keep asking is it contagious. also is it like aids i tell them no, we do not even get invited to their house anymore the only time we have contact now is on the phone.
i am not bothered anymore now about them,as i am learning to make new friends at local club.
 

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Discussion Starter · #7 ·
isavelives;517733 said:
I too am a lupus individual with IBS (or so they say until the abdominal CT comes back). I have severe abdominal pains whenever I eat. I end up going to the restroom until my body expels what I had just eaten. I do not absorb nutrients because I cannot hold it long enough. I hope this is not the same you have because I hate it.
Yes, abdominal pains are related to Lupus and so is stress. Don't let anyone tell you different. You may have a mixture of both which makes your stomach work extra hard. I hope that you and I find out how to handle this.
thank you for replying to me, i think this is with lupus as did not have any bother
before dx.
it is not a pleasant thing to deal with, my doctors have twice given me the same tablets which work but very slowly, i go to see rhmy at the end of this month, my doc says not to mention it but i might.
thanks again hugs sandy
 

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Discussion Starter · #8 ·
isavelives

isavelives;517733 said:
I too am a lupus individual with IBS (or so they say until the abdominal CT comes back). I have severe abdominal pains whenever I eat. I end up going to the restroom until my body expels what I had just eaten. I do not absorb nutrients because I cannot hold it long enough. I hope this is not the same you have because I hate it.
Yes, abdominal pains are related to Lupus and so is stress. Don't let anyone tell you different. You may have a mixture of both which makes your stomach work extra hard. I hope that you and I find out how to handle this.
hi and thank you for replying i feel sorry for you being in pain as i know what it is like.i am thinking of mentioning it to rhuemy when i go at end of August.
take care and thanks again hugs sandy
 

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Sandy,

Sorry to hear that your suffering tummy bloating etc.!

I am very suprised and shocked that your GP said not to mention it - please do mention it! When a GP uses phrases like "dosent think so" , that is just confirmation that they are not experts with chronic illnesses.

It may not be important, but that it for the Rhuemi to decide not your GP. If not Lupus related then so be it, but referrals can also be done by them to other specialist like a Gastrologist if need be for further investigations.

Take care!

Lesley
 

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Discussion Starter · #10 ·
lesley

greenhaggis;517745 said:
Sandy,

Sorry to hear that your suffering tummy bloating etc.!

I am very suprised and shocked that your GP said not to mention it - please do mention it! When a GP uses phrases like "dosent think so" , that is just confirmation that they are not experts with chronic illnesses.

It may not be important, but that it for the Rhuemi to decide not your GP. If not Lupus related then so be it, but referrals can also be done by them to other specialist like a Gastrologist if need be for further investigations.

Take care!

Lesley
thank you for replying i am taking your advice i am going to mention it to the rhuemy when i go at the end of this month even if it has nothing to do with lupus.
thanks for all replies hugs sandy
 

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Sandy,

Is the GP that said not to mention it to Rhuemie about the stomach issues the same one that told you not to use the internet to find out about Lupus!

I do hope you have a good appointment with your specialist at the end of this month - remember to tell them every symptom and pain since you last visited and things that are restricting your life more and more!

Also ask their advice of how you deal with problems as you dont know what could be Lupus or not (and nor does your GP) and if they have a contact no. that you can phone for queries and emergencies.

Hugs Lesley
 

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Hi Sandy

"For the past few days i have had pains in my stomach and back also bloating"

Sandy, I am eating a lot of gluten for a upcoming biopsy for Celiac, September 4th. The bloating in my stomach is terrible. I look nearly ten moths pregnant (miracle of science). I have much pain. My hands, arms and face is also swollen. I had a severe kidney/bladder infection, and vertigo (both haven treated and have calmed.) I also get these pimples that are very sore, and they also turn into sores, because scratch them when they get itchy.

I have IBS, leaky gut, and much constipation with diarrhea, when it deems fit to show it's ugly head. I also have Sjogrens. This bloating all started when I went back on gluten.

My Lupus symptoms are very active (have not been diagnosed yet with Lupus.)

Hugs

Gerri
 

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As Gerri has suggested, bloating is a very common symptom of coeliac disease. Coeliac is another autoimmune disorder, and is extremely underdiagnosed. The probably incidence (from population studies) is now thought to be about 1 in 100 people, but less than 1 in eight of these is actuallyt diagnosed. I'd strongly suggest pushing your GP to do the blood screening tests for coeliac (antiendomysial antibodies is usually the most accurate one). Just make sure, like Gerri, you stay on the full gluten containing diet until you have had the blood tests done, and then if they are positive still keep on eating gluten until you have had an endoscopy and biopsy to prove it conclusively. If it is coeliac, then the good news is that it doesn't take drugs to cure it, just a gluten free diet. Also, once on the gluten free diet you will notice positive changes very quickly (within weeks). A GF diet seems really difficult at first, but once you get used to it isnt hard at all, particularly if you cook your food from scratch rather than relying on pre-prepared and packaged meals.
 

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Discussion Starter · #14 ·
hi Lesley

greenhaggis;517747 said:
Sandy,

Is the GP that said not to mention it to Rhuemie about the stomach issues the same one that told you not to use the internet to find out about Lupus!

I do hope you have a good appointment with your specialist at the end of this month - remember to tell them every symptom and pain since you last visited and things that are restricting your life more and more!

Also ask their advice of how you deal with problems as you dont know what could be Lupus or not (and nor does your GP) and if they have a contact no. that you can phone for queries and emergencies.

Hugs Lesley
HI
yes this was the same doctor he said that this is probably my age and stress
that is causing all the uncomfortable problems i am having.
he wants me to take the full course of mintec and only then will he do any investigations if i am still having trouble.
as he says my sle is only mild, as if it is a matter of fact.
anyway thanks for the support and i will mention it to rhuemy.
hugs sandy
 

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Discussion Starter · #15 ·
Hi Gerry

Gerri54;517758 said:
Hi Sandy

"For the past few days i have had pains in my stomach and back also bloating"

Sandy, I am eating a lot of gluten for a upcoming biopsy for Celiac, September 4th. The bloating in my stomach is terrible. I look nearly ten moths pregnant (miracle of science). I have much pain. My hands, arms and face is also swollen. I had a severe kidney/bladder infection, and vertigo (both haven treated and have calmed.) I also get these pimples that are very sore, and they also turn into sores, because scratch them when they get itchy.

I have IBS, leaky gut, and much constipation with diarrhea, when it deems fit to show it's ugly head. I also have Sjogrens. This bloating all started when I went back on gluten.

My Lupus symptoms are very active (have not been diagnosed yet with Lupus.)

Hugs

Gerri
Hi Gerry
thanks for your reply unfortunatly my doctors do not like doing any tests untill you have been for a few times i had 3 water infections last year and they still did nothing, eventually i ended up in hospital as an out patientant the young doctor gave me a letter and the doctor said i had to have 5 water infections before they paid for tests.
i am reluctant to ask about diets as i am not a strong person to even contemplate talking to them about much.
Like you i look as though i am ready to drop a baby, people have asked am i pregnant.
i will go to library and try to find a diet.
Well thanks for responding
hugs sandy
 

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Discussion Starter · #16 ·
hi

cemc;517801 said:
As Gerri has suggested, bloating is a very common symptom of coeliac disease. Coeliac is another autoimmune disorder, and is extremely underdiagnosed. The probably incidence (from population studies) is now thought to be about 1 in 100 people, but less than 1 in eight of these is actuallyt diagnosed. I'd strongly suggest pushing your GP to do the blood screening tests for coeliac (antiendomysial antibodies is usually the most accurate one). Just make sure, like Gerri, you stay on the full gluten containing diet until you have had the blood tests done, and then if they are positive still keep on eating gluten until you have had an endoscopy and biopsy to prove it conclusively. If it is coeliac, then the good news is that it doesn't take drugs to cure it, just a gluten free diet. Also, once on the gluten free diet you will notice positive changes very quickly (within weeks). A GF diet seems really difficult at first, but once you get used to it isnt hard at all, particularly if you cook your food from scratch rather than relying on pre-prepared and packaged meals.
hi thanks for replying as i have said my doctors do not like to do tests untill you have had problems a few times they just give tablets out.
i am going to go to the library to see if i can get some diet books to help.
I do cook from scratch as i was brought up on stews etc as we were a big family, my husband has a lovely slim figure where i look as though i am pregnant all the time and it is so uncomfortable,i am going to mention it to
rhuemy as i have nothing to lose,mind saying that the hospital sent me the letter in june on my diagnosis and i still dont see rhuemy till end of August.
I only wish i could go private.
well sorry for moan
hugs sandy
 

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Sandy I'm sorry that your GP is so negative towards your problems - perhaps its time to change GP's. You can inisist on a referral to a gastrologist or even a gynaecologist, if you feel strongly issues with your stomach are not normal.

Just from personnel experience in the same practice I have had a few male GPs put my problems down to age and womens things (at time I was only 35). It was always like they were to scared to imagine there was something more serious wrong!

Another lady GP at the same surgery said all this womens problems was ridiculus and if a man present the same problem they would get immediate investigation!

In my opinion (and it is just mine) investigations should be carried out and if you need some drugs to help in the meantime those as well! Drugs can often hide the problems not solve them!

In the meantime your apointment is August is not really that far off! Keep strong and make sure you tell them everything that is happening! They can refer you on to people like Gynaecologist or Gastrolologist etc!

Be strong!

Lesley
 

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Discussion Starter · #18 ·
hi lesley

greenhaggis;517929 said:
Sandy I'm sorry that your GP is so negative towards your problems - perhaps its time to change GP's. You can inisist on a referral to a gastrologist or even a gynaecologist, if you feel strongly issues with your stomach are not normal.

Just from personnel experience in the same practice I have had a few male GPs put my problems down to age and womens things (at time I was only 35). It was always like they were to scared to imagine there was something more serious wrong!

Another lady GP at the same surgery said all this womens problems was ridiculus and if a man present the same problem they would get immediate investigation!

In my opinion (and it is just mine) investigations should be carried out and if you need some drugs to help in the meantime those as well! Drugs can often hide the problems not solve them!

In the meantime your apointment is August is not really that far off! Keep strong and make sure you tell them everything that is happening! They can refer you on to people like Gynaecologist or Gastrolologist etc!

Be strong!

Lesley
Sorry not replied earlier but have been staying at my daughters for the past few days, i will be making a note for rhuemy as i will probably forget what to say.
At our surgery we have a female doctor, but to be honest she is not that good either as i have had this problem for a couple of years now but not always the pain,it was her who said that basically i would just have to give it time as scan showed nothing out of the ordinary.
Never mind i will tell rhuemy and see what he has to say,in the meantime thanks for replying to me.
hugs sandy
 

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I have gastroparesis, weak or paralized stomach muscles from Lupus. I see a gastro doctor. Ive had many tests done and I take reglan 4 times a day. Only thing left is to put a pace maker in my stomach which I would have to travel 4 hours to another hospital to have this done. The bloating and discomfort and pain in my stomach effects my daily living and eating habits. I have trouble catching my breath or talking full sentences because I run out of air in my lungs do to the stomach swelling. My Gastro doctor said gastroparesis is common in lupus patients. The inflammation also effects my pancreas and gall bladder. I look 7 months pregnant and hardly eat much in a day. You would think I would lose weight but then the prednisone keeps me plump. The pain with lupus is my worst enemy. I can take many things but the chronic pain in the legs and hands is overwhelming. I see a Pain Clinic for the pain and the only thing that gives me decent relief is prednisone. Percocet helps take the edge off is all. Plaquenil, Ive been on 2 years and yet to feel a difference in pain control im just not as fatigued. I feel for you. All of us!! One day at a time. Noone can understand unless they are going through the same thing or something similar. Hugs!!
 
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