IC linked to Lupus?! Need some answers!

[NickiPage]

I have been talking with several about my IC and have the additional symptoms of extreme fatigue, swollen lymphnodes everywhere, pain in every joint, rash on my face and chest (worse when going outside), and can't sleep at night--not to mention extreme pain. I also have where my arms and legs will occassionally go numb or prickly feeling for no reason and had a really serious episode with it after my baby was born last spring where they were so numb I couldn't tell the doctor was sticking needles into my feet making them bleed! I was dizzy at the time with a bad ringing in my ears and low potassium--but that was about all I remember other than the only thing helping me was "corticosteroids"--which gave me almost immediate and complete relief. After about 5 months of steroids those symptoms seemed to clear up.

On talking to the local chapter for Lupus patients, it looks like there is something called "Lupus Cystitis"? Can anyone tell me more about this or let me know if they have similar symptoms/experiences and what I should do? I have at this time only been diagnosed with IC itself, but all the other symptoms seem unrelated from my understanding and I have been sick over a year now and just ready to get this thing figured out and get better!!!!

Thanks! Nicki

[sailawaygrl]

Hi Nikki,

I can understand your concern. I think the best thing for you to do at this point is call your personal care physician and discuss these concerns there. He or she can then refer you to the appropriate Dr for diagnosis. Everyone is so different, although there are people on this board that have lupus, it would be impossible for anyone to even make a suggestion that you have it as well.

I know you must be very anxious abou this, please call your Dr in the morning. Hopefully you can get in soon and ease your worries.

Sandra

[NickiPage]

Thank you!

These symptoms have been just going on for way too long (almost a year now) and my doctor is always "too busy" to answer the phone, see me more than for a few minutes at a time always so rushed, and I don't feel is getting to the bottom of this. I did call a rheumatologist and ask if they would possibly see me so we can get this resolved. I have been so sick I can hardly get out of bed some days and I am so sick of it!! Thank you again!
Nicki

[KarenAnne]

Nicki, Sounds like you already know that you need to see a rheumatologist. And it also sounds like you need a new primary care dr. You are saying your current dr. only sees you for a few minutes & won't return your calls. Lupus can go along with IC, as can any other autoimmune disease. A rheumatologist can examine you & do the proper blood tests to determine if you have Lupus or something else. Good luck.

[NickiPage]

Thank you! I am pretty discouraged!

It meant so much to hear from you tonight! I am really discouraged. I am really sick of trying to "guess" at what is going on and may be completely off track with the Lupus--but it was mentioned and looking at the symptoms--the only one I don't have is a fever for over 3 days that is unexplained... but I feel just terrible all the time lately with no energy, in terrible pain, and no answers and feel too depressed right now to even try to go through the efforts of looking for another doctor. I can't sleep at night, every joint in my body just hurts so bad, my pelvis feels like I've been stabbed repeatedly there and running pain down my legs and into my lower back. I know I am sounding really depressing to talk to tonight but I am literally at the end of my rope and when I called for an appointment with a rheumatologist they wouldn't even talk to me and just said I need to have blood screens done by my family doctor first! I am ready to give up--really and just let this thing run its course. I am sooo tired of all of this!!! Nicki

[cmclien]

Hi Nicki!
Sorry you are so discouraged tonight!!!!!
So can you go to your pcp and ask to have blood workup done for autoimmune diseases? Didn't you say you talked to a lupus foundation and they agreed you should have some screening done? Don't give up, I know you are so frustrated. There has to be a reason you have all these symptoms and even if the tests are all negative then you know to look somewhere else. You have to start somewhere. You said every joint in your body hurts, have you had someone look at you for fibro or other? I am just throwing out ideas but people don't hurt for NO reason like you do. These are not IC symptoms you are talking about. YEs, the bladder is but you have so much else going on and its possible its all related. It could be separate things too but a doctor has to decide this. Be honest about your symptoms, all of them, even if you feel silly mentioning them because there are so many.
Hang in there and hopefully you will find resolution and treatment.

[ICNDonna]

If your primary care physician doesn't have time for you, it's time to see a different doctor. If you call your local medical society, they may be able to help you find someone. If nothing else, start calling primary care doctors from the yellow pages of your phone book.

Please don't torture yourself with self diagnosis. Stress can be a trigger for all sorts of physical problems.

Sending warm hugs,
Donn

[NickiPage]

Thank you Cindi and Donna!!!!

You really encouraged me this morning to read your caring notes to me. I had open enrollment on my insurance this past week and changed plans so I can hopefully find a new doctor. My PCP has the additional setback of language barrier and I think that is why it is so hard to really "discuss" what is going on because often I feel she does not understand what I am saying at all and hones in on something different than I am asking... I asked her about the swollen stomach and pain for 3/4 of a year with no result other than she kept telling me I was "not pregnant" which was more than obvious and when I had a clear urinalysis it was over and done with. It was only when I called my GI doctor asking if there was anything we could do (after over 6 months of it) that he took it really seriously and started investigating and sent me to the bladder reconstructive doctor who did the laproscopy/cystoscopy and said I had the IC. I am very grateful to both these doctors for their persistence. I am getting the help I need for these things but the swollen glands around my neck, under my arms, groin, etc... are also painful (it hurts to lay my head on a pillow from the lumps behind my ear on my left side) and then my joints are painful too. I am not one to lay down during the day AT ALL--even after I had my son I was back up and running. I am working on my doctorate, run my own small construction company with my husband, and usually just always on the go. All these symptoms have literally put me in bed sometimes for whole days at a time. I am only bringing this up so you also know that I am not one to "stay sick" or have issues all the time. This is really new to me and just been going on for around a year now and I think what frustrates me the most is that no one can explain why/what is going on! I understand that doctors are human too and can only do what they know--run tests and through a process of elimination figure out what is happening.... but in the meantime I am almost at a standstill with everything I do and most problematic of all to me is not being able to run around and really play with my little 15 month old son who is very active now. I want to be a good mother to him and feel like he already turns to my husband for play because I am too slow and can't run around with him the way I want to. I don't mean to keep complaining and complaining, but I just don't want to be on a whole bunch of medicines (if at all possible) or feel like this either. I am willing to do the diet stuff and all till it gets resolved and take the Elmyron but this is just dragging on and on and I keep hearing that many of my symptoms are not IC so it is also making me wonder how much longer this will drag out and is getting me very down now. I think I do have IC too... the doctors and other's testimonies do convince me of that... but the rest is puzzling me and I am not trying to self-diagnose but just want the doctors to figure this out soon. Thank you both for all your encouragement and continued good thoughts. I think you are both angels for doing this for us "new-bies" here at the IC forum as you don't know how much you mean to me (and I am sure to all the others too!!) Nicki

[cmclien]

I'm really glad you are changing PCP's! After your hospital stay with the unknown autoimmune syndrome I think you have every right to ask for screening that would cover known autoimmune diseases. Its reasonable to ask for this. Write down all your symptoms and how they compare with the ones you had while in the hospital. Alot of times a doctor will put you on a temporary dose of steroids to see how you respond (at least thats what my rheumatologist did). Also, my rheumatologist is the one who did my blood work from the getgo so I am a little confused and understand your frustration that they told you to have blood work done before they would even see you. They don't all work that way! You will eventually figure this out and get on meds to feel better. Its the frustration of finding someone who will help you that is so maddening!

P.S. Since you are going to be picking a new doctor, perhaps look for an internist as they have additional training and might have more knowledge into your array of symptoms and what they might be.

[NickiPage]

Thank you Cindi!

You are so dear!!! I will look for an internist. Thanks for that suggestion! The only thing that did help me back last year were coriticosteroids--and they only put me on them accidently because at first they thought I was having a problem with my pituitary tumor situation where I was really thirsty and having to go a lot which had happened to me after both surgeries from my adrenal glands stopping making cortisone. But when they checked all my pituitary things were fine--but the corticosteroids stopped ALL symptoms for me within several hours each time as long as it was a big enough dose--and then as soon as they would start tapering me down they would stop--but eventually it all seemed to clear up mostly although I still have the numbness/tingling in my hands and feet at times but not completely numb all the time like at first. I really don't know what is happening but they did say that it was an autoimmune reaction at the time but could not say what or why other than possibly related to the H1N1 vaccine which also didn't really add up to me... others had more severe symptoms than I did which didn't go away from the H1N1... anyways... I will take my courage back up and find a new PCP this week and simply request them to do a blood test to see if they can find out what is going on for me and then listen to their advice. I am going to try to stop worrying about it so much as I am sure that it also doesn't help. I think the most maddening as you said is when no one seems to "listen" to you and you are so sick but having all of your cheerful encouragements is making me feel MUCH better believe it or not!!! It is giving me hope and new commitment that I can and will be better soon! Nicki

[Lesleyjoy]

IC and Lupus

Yes, there can be a connection between IC and Lupus as they are both autoimmune conditions. Autoimmune conditions like to hang around in groups eg Lupus, Sjogrens, IC or any other combinations you might think of
Not everyone who has IC has another autoimmune condition, but I bet a good percentage of them do.
I have a bunch of AI's (autoimmunes) but am sero-negative ie nothing shows up in my bloodwork! I stated off with CFS (chronic fatigue syndrome), pelvic pain symptoms, IBS (irritable bowel syndrome), Sjogrens(dry mouth and eyes) then IC. Luckily I'm not too bad and my IC only flares 3 or 4 times a year. The rhumatologist(autoimmune specialist) says that he has a percentage of patients who are sero-negative and he thinks I may have Lupus!

Good luck to you, it's a gruelling time when you first recognise that you might have IC. My urologist (also my gynae) diagnosed my condition with a bladder extention and medication. It took a while to settle down (about 3 or 4 months) but helped alot. I'm not on Elmiron but generally stick to the IC diet sheet. I gave up tea and coffee last year

Hope you feel alot better soon, Lesley

My meds are:
*Doxepin(low dose tricyclic) 20 mgs per night
*Loretadine (antihistamine)
*Brufen Retard 800(antimflammatory) when needed
*Vesicare when needed.

[NickiPage]

Thank you Lesley!

I really appreciate you sharing that with me! I actually went to my family doctor today and was shocked that he really listened to my concerns (and my husband was there to helping me to talk to him) since it has been a host of symptoms over the past year and a half with very little relief. He really really listened and said "you know, I think you may have Lupus" and it was because I had the rash (which I didn't even think was bad this morning as I had mostly been indoors the past couple days due to the rain here and yet he still could see it and then I had all the swollen lymphnodes he checked and the bruises everywhere and swollen joints. He is sending me to the hospital in the morning for a full blood work up but told me himself that he did not want me to get frustrated if it all turned out negative because it is often the case, even with the disease, and that he still wants to refer me to a rheumatologist immediately. He is also wanting them to x-ray all the joints that are affected right now--both ankles, wrists, back, neck, etc.. and is really taking me seriously! I was actually in shock because I mostly see his mother who is also a doctor at the same clinic and I feel she never listens to what I am trying to say, muchless believes me. I was so grateful that he really heard me and cared!!! At a time like this, that is the worst feeling to be in so much pain and have no answers with no doctors taking you seriously. I went from there to my GYN-Urologist who did a Urodynamics on me today and what they call "physical therapy" to work on the muscles of my abdominal floor and stuff. It was not fun and very uncomfortable. I have had a severe stabbing pain in my lower pelvic area for some time now and when I asked her today to have some tramadol for pain I was greatly hurt and surprised that she said it was the last time because if I need more pain medicine she is going to have to refer me as if to say I had done something wrong. I cried all the way home. I thought tramadol was a good choice in pain medicine since it is not a narcotic and has helped relieve the pain well for longer periods of time without causing me to get too sleepy since I am working on my doctorate right now. I felt like she was saying I was some kind of druggie or something and was humiliated, embarrassed, and very upset. I don't ask the doctors for pain medicine unless I am really at my wits end with something and I have been practically completely bed ridden over the past month from the pain!!! And I had not even asked her before this but it has been so bad that I finally did today! I am still pretty upset about it all but my husband said I should not let her affect me that way that it is her problem for not believing me or being scared to treat me. But it still just adds to the inner turmoil I feel over this whole situation.
I did not ask to be sick. I am not wanting medicines in the first place and trying to find out about any and every natural remedy possible. I have a 15 month old son who I treasure with my whole heart that I want to take for walks, and run around the house with, and play at the park with--and I am practically bed-bound right now completely. I am frustrated and just needing some relief and then treated as if I am a criminal for asking for some relief. It really hurt me. But anyways... I guess I could go on and on about it but either someone does have compassion or does not.
What I am so grateful for today is that my family doctor is so aggressively tackling this whole thing head on and trying to help me get a true diagnosis and some answers. He said he understood that the hardest is having all these issues with no real answers and that it can be very difficult for someone. He also gave me a new medicine to try that helps rheumatoid arthritis symptoms and I have a feeling that it may give me the true relief that I am looking for so it is not really a problem that the other doctor did that--just more of a thing that hurt my feelings more than anything.

Thank you again for staying in touch with me! It means a lot to me to hear from you and others as it is very discouraging some days for me right now. But I think that the Elmiron is really helping me already a little (or the diet change) as I am also noticing that the pain at times does not seem quite as intense as it was even a week ago!!!! SO I am also really grateful for that too and hopeful now that some answers will come and relief too! Take care! Nicki

[sailawaygrl]

I am so glad to hear that you found a Dr that is listening to you and sending you on the right path. Please don't feel badly that your other Dr reacted that way about the pain meds. It is very hard not to take it personally, I know. I think they are very hesitant to perscribe pain meds because it can cause so much scrutiny. It is a good thing that she said if you need more than that she will refer you to pain management. Many Dr's won't even do that for their patients. If you need more pain control by all means ask for the referral. There is NO reason for us to have to suffer in pain. It is really cruel for them to let us hurt all the time when there are perfectly safe meds we can use and live a better life.

It is very hard when you are in the "not knowing " phase with all of these symptoms. I hope you are on your way to getting a good diagnosis and even better treatments! Glad that the elmiron seems to be helping you so much.

Keep us updated!
Sandra

[NickiPage]

Thank you so much Sandra!

I did not realize that the concern of the doctors was scrutiny! That helped me tonight as I took it quite personally despite "knowing" that I shouldn't. I guess when you are in this much pain the thought that someone can help give you relief and is simply withholding it for any old reason makes one feel almost a little angry inside as it doesn't seem fair. I did not realize that it was a good thing she is offering a referral! So thank you for explaining that to me! What is "pain management"? I mean, who is it and what do they do? Would it be better just to stick it out a little longer since the Elmiron seems to be helping a little or is it worth pursuing something like that already? It is not just the severe pelvic pain for me that is the issue but all my joints.... but I can also take a lot--I just have to stay in bed to do it unfortunately but don't want to make a big stink with the doctors either as I would just rather go to bed and deal with it than be treated like I'm a bad person for asking for help with the pain! You made me feel a lot better tonight as it has been still really bothering me this evening on my mind and making me go between feeling really hurt about it to really angry about it because it seems so calloused and unfair. I think you are right that we should not have to suffer like this when they have the power to help us. I understand that our country suffers from a great deal of drug abuse issues, but they should not take that out on a simple mother who is obviously not a drug addict since I am working on my doctorate in college, run my own construction company, and have a lot of other things going in my life as well as church to show that my aim is not to become an addict either--just to get some temporary relief until the healing meds kick in (like the Elmiron)... Thanks for cheering me up!!! Nicki

[sailawaygrl]

Your welcome Nikki,

I think we have all been in your shoes. It is always so scary to ask for help when we hurt too. Pain management Dr's are usually anesthesiologist and they will work with you on the best form of pain control for your condition. They will usually have you sign a pain contract that says you won't get meds anywhere else and they monitor how much you are taking. I know some people say they give them urine tests to see how much is in their systems. I haven't ever had to do that. I have found a Dr here that specializes in pain management and he is a physiologist. I am waiting for a referral to see him but from what I understand he uses a lot of different approaches to help pain. Like physical therapy, accupuncture as well as pain meds. I am really hoping he can help me. I am not sure if there are a lot of those Dr's out there. I just did a web search and found him. It's really up to you if you feel you need to see someone now. Only you know what your pain levels are. I hope you continue to feel better with the elmiron and don't need anything else!

Sandra