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Treatment
Hello, my name is Kiki, I am 23 and just found out I have GM. I had a biopsy last month and was given the results this past Tuesday May 31st. I have another appointment at the end of June but I am feeling clueless, I won't know much til then. Does anyone know what is the next step as far as treatment? What do the doctors first attempt for treatment? I know everyone's case is different but I just wanted to know a little bit more since there isn't much information online. If you have any info please do tell. Thank you!
Thank you for your advice. I also noticed when I rest more the lump goes down and I feel better. Although it's very hard for me to get enough rest since I commute from Los Angeles, CA to Santa Ana, CA, Monday through Friday for work. It is very draining. I have very long days.
I feel nausea all day long. It is horrible. I have good and bad days. I have random symptoms here and there which include fevers of course. I always have fatigue, it feels worse than the fatigue from pregnancy.
As far as who I am being seen by now, well I don't have a specific doctor at the moment. I am being seen at LAC USC. I have a follow up appointment for the biopsy on Monday June 27th. I will be seeing the doctor that day. I am not sure what to expect. I am not sure what questions to ask. So if anyone does have any questions in mind please advice.
What is usually the next step? JoJo what suggestions or advice do you have? Please let me know. Thank you.
Kiki
I feel nausea all day long. It is horrible. I have good and bad days. I have random symptoms here and there which include fevers of course. I always have fatigue, it feels worse than the fatigue from pregnancy.
As far as who I am being seen by now, well I don't have a specific doctor at the moment. I am being seen at LAC USC. I have a follow up appointment for the biopsy on Monday June 27th. I will be seeing the doctor that day. I am not sure what to expect. I am not sure what questions to ask. So if anyone does have any questions in mind please advice.
What is usually the next step? JoJo what suggestions or advice do you have? Please let me know. Thank you.
Kiki
Is Fibromommy calling Canadians slow :) That's ok as we will be winning the Stanley Cup on Monday and bringing it back to Canada where it belongs!
Anyway - Hi Kiki and welcome.
The ladies have all given you great advice.
I know this is a very scary time when you become ill and are not sure what is in store for you. Do remember to be very kind to yourself and eat and rest well and keep your stress low. I think resting does help the inflammation settle down.
As for your other symptoms, they are pretty standard for GM. Remember your body's immune system is working overtime right now. You have massive inflammation going on - that is certainly enough to fatigue anyone.
Many women report fevers. I have had severe back pain....
So you are not alone in any of this, and there is hope for management and beating this disease - some women resolve with very little intervention.
What you need is a good doctor first and foremost. Someone you trust. You mentioned you went somewhere else - who is treating you now? Have they ever treated GM before, what is their knowledge level and suggested treatment approach for you.
I also take Keflex when I have a flare, and it does seem to help somewhat, although I don't know how, and unfortunately it does not clear things up in my breast, just seems to make me feel a little better systemically.
Wishing you well, let us know how you are doing. We do care and have lots of knowledge and resources to help you through this.
Jo
Anyway - Hi Kiki and welcome.
The ladies have all given you great advice.
I know this is a very scary time when you become ill and are not sure what is in store for you. Do remember to be very kind to yourself and eat and rest well and keep your stress low. I think resting does help the inflammation settle down.
As for your other symptoms, they are pretty standard for GM. Remember your body's immune system is working overtime right now. You have massive inflammation going on - that is certainly enough to fatigue anyone.
Many women report fevers. I have had severe back pain....
So you are not alone in any of this, and there is hope for management and beating this disease - some women resolve with very little intervention.
What you need is a good doctor first and foremost. Someone you trust. You mentioned you went somewhere else - who is treating you now? Have they ever treated GM before, what is their knowledge level and suggested treatment approach for you.
I also take Keflex when I have a flare, and it does seem to help somewhat, although I don't know how, and unfortunately it does not clear things up in my breast, just seems to make me feel a little better systemically.
Wishing you well, let us know how you are doing. We do care and have lots of knowledge and resources to help you through this.
Jo
Thank you to everyone for all your comments and advice. I really appreciate it. I am just so tired of being tired and tired of being sick. I will keep everyone updated as to what the dr suggests for treatment. Thank you again!
Kiki,
All of the extra symptoms you are having are "normal" for GM. Not everyone has the same symptoms, but fevers, headaches, joint pain, flu-like symptoms, exhaustion, etc. are all pretty common.
You should read through the posts on this page, even all the way through to the very old ones. We have all written to each other about treatments, symptoms, etc. You will find good information here. Also, if you have questions, post them here, and we will answer : )
The next step can range from surgery to medications (steroids and methotrexate are the most common) to not doing any of the common treatments (my chosen course of action). Make sure that YOU educate yourself and make a good decision for yourself based on what you feel is best for you....don't let your doctors push you into anything. Doctors can be very helpful to you, but keep in mind that most doctors to not know very much about this disease, so let them help you, but don't let them pressure you.
Jennifer
All of the extra symptoms you are having are "normal" for GM. Not everyone has the same symptoms, but fevers, headaches, joint pain, flu-like symptoms, exhaustion, etc. are all pretty common.
You should read through the posts on this page, even all the way through to the very old ones. We have all written to each other about treatments, symptoms, etc. You will find good information here. Also, if you have questions, post them here, and we will answer : )
The next step can range from surgery to medications (steroids and methotrexate are the most common) to not doing any of the common treatments (my chosen course of action). Make sure that YOU educate yourself and make a good decision for yourself based on what you feel is best for you....don't let your doctors push you into anything. Doctors can be very helpful to you, but keep in mind that most doctors to not know very much about this disease, so let them help you, but don't let them pressure you.
Jennifer
Hi Kiki
I was only diagnosed with GM a couple of months ago and have had to become an expert in a short time. I currently live in Belgium but am from the UK. I was lucky to see a doctor here that has treated another GM patient. He was totally against drainage and prescribed predisolne. I was on this for 3 weeks and it went away. I originally had the first bout of this 4 years ago which went away on its own without diagnosis. You will read so many versions of this disease from low to high. I am lucky so far that I have not had any holes or anything draining out. Whether this will change in the future I am unsure. I'm planning on seeing a counsellor to help me accept this and hope to cope in the future.
Even though I felt totally alone after the diagnosis, its great to have this facility to speak to ladies in the same position rather than to listen to doctors that just treat you as a patient with a weird disease.
julie
I was only diagnosed with GM a couple of months ago and have had to become an expert in a short time. I currently live in Belgium but am from the UK. I was lucky to see a doctor here that has treated another GM patient. He was totally against drainage and prescribed predisolne. I was on this for 3 weeks and it went away. I originally had the first bout of this 4 years ago which went away on its own without diagnosis. You will read so many versions of this disease from low to high. I am lucky so far that I have not had any holes or anything draining out. Whether this will change in the future I am unsure. I'm planning on seeing a counsellor to help me accept this and hope to cope in the future.
Even though I felt totally alone after the diagnosis, its great to have this facility to speak to ladies in the same position rather than to listen to doctors that just treat you as a patient with a weird disease.
julie
Kiki, trust your instincts. You are in the accute stages of a new and strange desease. All of your symptoms are related. It is very hard to tell which are side effects and which are the desease...but a good doctor, and lots of reading, will help you sort thru it.
Take care of yourself. Sleep, clean up your diet, moderate, low impact exercise. Talk to people about it. You would be supprised what people around you can tell you. Most of all get a good doctor. If you don't feel like you are being listened to...you probably aren't.
This web site is a great resource...and a wonderful community.
Mary
Take care of yourself. Sleep, clean up your diet, moderate, low impact exercise. Talk to people about it. You would be supprised what people around you can tell you. Most of all get a good doctor. If you don't feel like you are being listened to...you probably aren't.
This web site is a great resource...and a wonderful community.
Mary
I can't really answer that because I have fibromyalgia on top of the GM, so I am full of pains and severe exhaustion to begin with. So I know nothing different. But several of the women on here have talked about having no energy, fevers and other body issues. I do know that when my GM is flaring it makes my fibro flare and I feel like crap. And I think I remember some of the women mentioning they feel like they have the flu. So it doesn't sound like you are alone.
Several of the women are in Canada, so it takes several hours for them to respond. But give it some time and you will get more responses. My mom also had breast cancer and at first they thought mine was breast cancer, so I totally understand your concern. A lot of women are first misdiagnosed as breast cancer when it really is GM, but if your biopsy came back GM then you should be good. But it is always in the back of my mind that maybe someday cancer will turn up.
Hang in there, you will get through this.
Several of the women are in Canada, so it takes several hours for them to respond. But give it some time and you will get more responses. My mom also had breast cancer and at first they thought mine was breast cancer, so I totally understand your concern. A lot of women are first misdiagnosed as breast cancer when it really is GM, but if your biopsy came back GM then you should be good. But it is always in the back of my mind that maybe someday cancer will turn up.
Hang in there, you will get through this.
Thank you so much for your comment. I forgot to add a few more details my questions. So back in April I felt the lump and went to the dr and was referred to a breast clinic. The doctor at the breast clinic said it was mastitis. So she prescribed 10 days of Keflex, 3 times a day. Took it all and didn't miss a dose and I felt so much better. I called her back and said I was done with the medication and was feeling ill again. I asked if the antibiotic would continue to work even after I was done with the medication, she replied taking more medication would only make it worse. She said to give it two weeks, so I went somewhere because I felt like she was not taking me serious. My mother's sister had breast cancer last year so that was a concern to me. Anyways now I am feeling so so drained, I have fevers on and off, migraines, and I have unexplained back pain. I don't see how that back pain is related. Am I crazy for feeling these symptoms?
Welcome to our group. I am so sorry you have to go through this being so young. I too am only 32, which still seems so young for me to have to be dealing with this. I think most women on this site would absolutely advise NO surgery! Rheumatologists are the doctors that are best to treat this disease along with a great breast surgeon.
The first line of action is usually medication. The most common medications are predinose and methotrexate and my dr. has been using imuran. Some doctors also use antibiotics but I think most women on here would say that those only work if there is a known infection going on. (Most GM instances are sterile and contain no bacteria, thus needing no antibiotics, but only cultures can know if bacteria is present).
Unfortunately, you have to learn to be patient. There is no specific formula for fixing GM. This disease is still so new for doctors and they still don't know why women get it, how women get it, how to treat it, etc. But definitely educate yourself. JoJo the founder of the group has put a lot of great info on here to help you educate yourself and to help explain exactly what you are dealing with.
But please know we are here for you. We have all been there and some of us are still dealing with. Feel free to ask any questions, we are here to support you.
Fibromommyx3
The first line of action is usually medication. The most common medications are predinose and methotrexate and my dr. has been using imuran. Some doctors also use antibiotics but I think most women on here would say that those only work if there is a known infection going on. (Most GM instances are sterile and contain no bacteria, thus needing no antibiotics, but only cultures can know if bacteria is present).
Unfortunately, you have to learn to be patient. There is no specific formula for fixing GM. This disease is still so new for doctors and they still don't know why women get it, how women get it, how to treat it, etc. But definitely educate yourself. JoJo the founder of the group has put a lot of great info on here to help you educate yourself and to help explain exactly what you are dealing with.
But please know we are here for you. We have all been there and some of us are still dealing with. Feel free to ask any questions, we are here to support you.
Fibromommyx3
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