Jean in Newcastle Posted January 16, 2013 Share Posted January 16, 2013 Let's see - the background: I've had chronic pain issues for at least 25 years. 20 years ago I was diagnosed with fibromyalgia. Different doctors have been dissatisfied with that diagnosis but have never been able to pin it on anything else and fibro does fit my daily problems. Lupus has been ruled out. Arthritis (in it's many varieties) has been ruled out. I'm satisfied with my life and treatment regimen for the daily. I get these "attacks" (which I'll explain soon) a couple of times a year. This isn't the first time I've had this happen and I'm sure it won't be the last (sigh). The foreground: I'm in what best can be described as a "cascade inflammatory response". I have no idea what has triggered it since nothing (diet etc.) has changed. I have been pushing it lately to get things done. Basically I've turned into the Stay-puft Marshmallow Woman. I am having difficulty walking because my feet and ankles are so swollen. My elbows are swollen and painful. I could go down the list of swollen body parts but I'll spare you. I tried going to Zumba last night (I help out in the class) but only lasted a half hour before I went home in tears. My Home Treatment: I did yesterday what I do in these situations: highest dose of Aleve that is safe around the clock, curcumin (natural anti-inflammatory), shoes for support. I take a diuretic for my blood pressure. (I have to get new batteries for my cuff but I assume from past experience that my b.p. is high.) My Dilemma: Do I bother to go to the doctor? The doctor knows about these "attacks" but he's never seen one in progress. In the past he's suggested the anti-inflammatories and rest. I'm doing that already. Usually these attacks last for a couple of days. This is my second day so I may be fine by tomorrow. I'd rather not skip school unless I have to since I have a high schooler. I know that I won't die. I haven't died in the last 20 some years. . . . Quote Link to comment Share on other sites More sharing options...
4everHis Posted January 16, 2013 Share Posted January 16, 2013 I don't have any answers but I am sorry you are living this just now. Prayers that you find some answers. Quote Link to comment Share on other sites More sharing options...
elfgivas Posted January 16, 2013 Share Posted January 16, 2013 if you think it would help the doctor to see it in progress, then i'd go. sometimes a visual is way more effective than a narrative. meanwhile, we'll pray. ann Quote Link to comment Share on other sites More sharing options...
JudoMom Posted January 16, 2013 Share Posted January 16, 2013 I would want my doctor to see one in progress, so yes, I would go. It might give an important clue. ETA: We spent 2 years trying to get a diagnosis for middle ds from the ages of 2-4. It wasn't until the rheumatologist actually saw his knees red and swollen that he was able to diagnose the JRA and start him on treatment. His labs don't present in a textbook fashion for arthritis, just like mine don't present in a textbook fashion for my autoimmune hepatitis. Quote Link to comment Share on other sites More sharing options...
Susan C. Posted January 16, 2013 Share Posted January 16, 2013 I would only go to the doctor if I didn't get better in a reasonable amount of time. Doctor visits are stressful (not resting) and then you pick up the bugs that are there. And your doctor may not be able to do any more that what you are doing already. Quote Link to comment Share on other sites More sharing options...
Dandelion Posted January 16, 2013 Share Posted January 16, 2013 I'm sorry you're in so much pain, Jean. :grouphug: I would only go to the doctor if you think it will help him gain more insight into your condition and/or do more to help you. If seeing him won't accomplish either, I'd stay home. Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted January 16, 2013 Share Posted January 16, 2013 I would go so he could see it. Insist that you get in today. Sometimes they just don't get it unless they see it. Go, and I hope you find relief soon! :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 16, 2013 Author Share Posted January 16, 2013 Dh (an RN) doesn't think the doctor will be able to help me. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted January 16, 2013 Share Posted January 16, 2013 If you don't want to head to the doctor maybe you could take pictures so that the next time you are there you can show him? I'm sorry for all your pain. Prayers coming your way! Elise in NC Quote Link to comment Share on other sites More sharing options...
Guest inoubliable Posted January 16, 2013 Share Posted January 16, 2013 Oh, Jean. :grouphug: :grouphug: :grouphug: If it were me, I'd go to the doctor just so he could SEE what's going on. I am so sorry for all of your pain and I hope that this flare passes quickly. Hugs to you! Quote Link to comment Share on other sites More sharing options...
JudoMom Posted January 16, 2013 Share Posted January 16, 2013 I doubt the doctor could do something to help you today, but sometimes just letting the doctor see what is happening can help find an answer. Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Jan in SC Posted January 16, 2013 Share Posted January 16, 2013 I think you should find a really good rheumatologist. Quote Link to comment Share on other sites More sharing options...
1bassoon Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: I'm so sorry, Jean. Praying for wisdom. Quote Link to comment Share on other sites More sharing options...
mumto2 Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: I will pray. I have to add my vote to the let the Dr.see what an attack is like for you. You strike me as a pretty upbeat person who probably doesn't complain nearly enough. The doctor may not understand the truth of the situation. Seeing might trigger a new idea that might help. I know my ruptured disc is not the same thing at all but post surgery I was kindly yelled at for not complaining more. The doctor apparently took one look in the operating room an couldn't believe that he had allowed me to live with that for months. Quote Link to comment Share on other sites More sharing options...
Kim in Appalachia Posted January 16, 2013 Share Posted January 16, 2013 I am not a "run to the doctor" type, but honestly, I think you should go. Your dh may be right, there is probably nothing that can be done. But it would be good for your doctor to see the flare up. It is good for the doctor to have a visual. It's also a good time for you to remind him (or her) that you would like to figure out if anything else can be done. I know it sounds awful, but go over to the office and sit there all afternoon if that what it takes to be seen. and :grouphug: . Quote Link to comment Share on other sites More sharing options...
pdalley Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: No advice but hugs and prayers, Jean. Quote Link to comment Share on other sites More sharing options...
Twigs Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
DaffodilDreams Posted January 16, 2013 Share Posted January 16, 2013 Yes, I would want my doctor to see me in such a state. I also suggest seeking out an experienced acupuncturist and hopefully getting in to see him or her while you're like this. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 16, 2013 Author Share Posted January 16, 2013 Well, I'm at a point in my pain levels where I can't think straight. So here is my immediate plan - take all my meds (did this about 15 mn. ago). See how I feel once the meds (hopefully) work. I'm functional - not at all cylinders but I've still got a few cylinders firing. Both my doctor and my dh have told me fairly recently (in much more diplomatic terms) "Life's a b*tch. You just have to deal with it." I think I'd have to push some to have him look further. Not sure I have the energy to do that. Quote Link to comment Share on other sites More sharing options...
happi duck Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted January 16, 2013 Share Posted January 16, 2013 I am sorry you're hurting, Jean. I would try to get into the doctor while you are still exhibiting your symptoms. It will help him/her to see what you're talking about. The best treatment my youngest received was when he has an asthma attack AT the doctor's office. I could show the doctor exactly what I was worried about. (In his case, he gives no warning that he's having a hard time breathing. He escalates to gagging and coughing and retracting within 2 minutes.) That's really the only reason I say to try to get in now. Also, they will know you're not "faking it". I still think in the back of some doctors' minds that if they don't SEE it, it only exists in the patient's head. Not that your doctor is like that at all. Just something to think about. I sure hope you feel better soon. Hang in there! Quote Link to comment Share on other sites More sharing options...
Myra Posted January 16, 2013 Share Posted January 16, 2013 "Let's see - the background: I've had chronic pain issues for at least 25 years. 20 years ago I was diagnosed with fibromyalgia" Oh my! This sounds like a quote right from my friend. Finally, finally she was diagnosed with acute lyme disease even after all the basic screening tests came up negative for lyme and 20 years of so much pain that I thought she was going to have a nervous breakdown. It wasn't until her dog's vet saw her one day at her puppy's appt that she recommended the right doctors and the right tests, etc. Now even though her pain level and joint/body pain isn't any lesser at least now knows the reason and is actively seasrching out more treatments as they come available. My thoughts are with you! Myra Quote Link to comment Share on other sites More sharing options...
fraidycat Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted January 16, 2013 Share Posted January 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Barb_ Posted January 16, 2013 Share Posted January 16, 2013 Jean, yes please go. Two reasons. It would be so valuable for your doctor to witness your symptoms first hand. I'm mostly worried that this has been going on for so long. You say this hasn't killed you, but 20 years ago you were 20 years younger. Aging itself is hard on a healthy body. What if whatever is making you Ill is also slowly destroying the function of some of your organs? Please go see your doctor. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 16, 2013 Author Share Posted January 16, 2013 I have an appointment for tomorrow morning. They could have gotten me in today with a stranger but I don't think that would have been as much help since he wouldn't know my history and wouldn't be following up on care. Quote Link to comment Share on other sites More sharing options...
Jan in SC Posted January 16, 2013 Share Posted January 16, 2013 Fresh eyes can sometimes be a good thing. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 16, 2013 Share Posted January 16, 2013 Also, if you've never done it, take photographs of your swollen places (and photographs when you are normal). It's great visual documentation for future new doctors you may have to work with. Be sure to capture dates, as some flares tend to be seasonal. Does stuff show up in your labs? Like, surely your sed rate would be up right now, wouldn't it? Has that ever been captured during a flare? Quote Link to comment Share on other sites More sharing options...
besroma Posted January 16, 2013 Share Posted January 16, 2013 I hope you get some answers tomorrow. I am glad you were able to get an appointment. I do agree that fresh eyes might be a good thing if you get the opportunity to be seen by someone else in the practice. Quote Link to comment Share on other sites More sharing options...
Impish Posted January 16, 2013 Share Posted January 16, 2013 Oh, Jean. I'm so sorry. :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
mommymonster Posted January 16, 2013 Share Posted January 16, 2013 Have you visited with a rheumatologist? Also, an aunt has symptoms consistent with yours, and she has fibromyalgia and heart issues. A visit to the cardiologist may not be a bad idea, either, especially with the puffiness. And, this is kindly meant, but if your husband isn't a RN who focuses in rheumatology or fibromyalgia, take his advice with a grain of salt. My sister is a NICU nurse, and she is pretty much useless for anything but her specialty (with all due respect to her 15 years of experience). Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 16, 2013 Author Share Posted January 16, 2013 Also, if you've never done it, take photographs of your swollen places (and photographs when you are normal). It's great visual documentation for future new doctors you may have to work with. Be sure to capture dates, as some flares tend to be seasonal. Does stuff show up in your labs? Like, surely your sed rate would be up right now, wouldn't it? Has that ever been captured during a flare? Have you visited with a rheumatologist? Also, an aunt has symptoms consistent with yours, and she has fibromyalgia and heart issues. A visit to the cardiologist may not be a bad idea, either, especially with the puffiness. And, this is kindly meant, but if your husband isn't a RN who focuses in rheumatology or fibromyalgia, take his advice with a grain of salt. My sister is a NICU nurse, and she is pretty much useless for anything but her specialty (with all due respect to her 15 years of experience). My Sed rate is always up. Probably more now. My heart has been thoroughly checked out - over and over again, actually. Mommymonster, I hear you on the RN specialty thing but his opinion is more from having gone to doctor after doctor with me over the past 20 years. I think we're both a bit jaded. Quote Link to comment Share on other sites More sharing options...
QueenCat Posted January 17, 2013 Share Posted January 17, 2013 :grouphug: Jean :grouphug: Quote Link to comment Share on other sites More sharing options...
Oakblossoms Posted January 17, 2013 Share Posted January 17, 2013 Have you tried Epsom Salt baths? They are detoxing and a great way to get magnesium into your diet. magnesium is very calming. Would going to someplace like The Bastyr Clinic be an option? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 17, 2013 Author Share Posted January 17, 2013 Have you tried Epsom Salt baths? They are detoxing and a great way to get magnesium into your diet. magnesium is very calming. Would going to someplace like The Bastyr Clinic be an option? I love magnesium. I'm taking about 500 mg orally every night in the form of Natural Calm. I took an epsom salt bath last night. I wish I would stay in there 24/7 but of course I can't. My dh wants me to go to Bastyr. I'm on the fence because of how time consuming it would be. Quote Link to comment Share on other sites More sharing options...
Oakblossoms Posted January 17, 2013 Share Posted January 17, 2013 It might be less time consuming in the long run though :). Time to feel good and all that. Quote Link to comment Share on other sites More sharing options...
KnitWit Posted January 17, 2013 Share Posted January 17, 2013 Oh Jean! :grouphug: I'm rarely here lately but I'm glad I came today. I will be praying for you! Quote Link to comment Share on other sites More sharing options...
J-rap Posted January 17, 2013 Share Posted January 17, 2013 I am so sorry. I would encourage you to go to the doctor while you're exhibiting the symptoms, so he/she can see them firsthand. It might be very helpful for further treatment. This may sound very naive, because I'm sure you have looked into absolutely everything by now...but have you ever looked into the paleo diet? I've heard that it helps with inflammation, which apparently is at the root of so many conditions... Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted January 17, 2013 Share Posted January 17, 2013 Jean, key words are Pain Relief! You can continue looking for the cause and/or treatment that works for the third decade any time. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted January 17, 2013 Share Posted January 17, 2013 I'm praying for you, Jean. I am always amazed at how kind and gracious you are, and how helpful you are to others, when you are feeling awful yourself. You are such an inspiration. :grouphug: Quote Link to comment Share on other sites More sharing options...
Plink Posted January 17, 2013 Share Posted January 17, 2013 Praying for you Jean! My friend, Jeff, runs a great facebook group for Fibro/Lyme/Doctors-can't-name-the-Illness. I'm sure you have heard many of the recommendations before, but it is a great community of people who understand your frustrations and he is awesome about updating on new studies, ancient medicine, and everything in between. https://www.facebook.com/PrimalHealing Quote Link to comment Share on other sites More sharing options...
Freckles Posted January 17, 2013 Share Posted January 17, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 17, 2013 Author Share Posted January 17, 2013 It might be less time consuming in the long run though :). Time to feel good and all that. True, that! I am so sorry. I would encourage you to go to the doctor while you're exhibiting the symptoms, so he/she can see them firsthand. It might be very helpful for further treatment. This may sound very naive, because I'm sure you have looked into absolutely everything by now...but have you ever looked into the paleo diet? I've heard that it helps with inflammation, which apparently is at the root of so many conditions... I'm not doing strict paleo but I've been doing a lower carb (150 g. of carbs approx.) diet. and those carbs are whole grains most of the time. I've been also trying to avoid wheat and have been doing spelt or other grains or sprouted grains like the Ezek. 4:9 bread (which I realize does contain wheat). Jean, key words are Pain Relief! You can continue looking for the cause and/or treatment that works for the third decade any time. Yes, ma'am. :gnorsi: Praying for you Jean! My friend, Jeff, runs a great facebook group for Fibro/Lyme/Doctors-can't-name-the-Illness. I'm sure you have heard many of the recommendations before, but it is a great community of people who understand your frustrations and he is awesome about updating on new studies, ancient medicine, and everything in between. https://www.facebook.com/PrimalHealing I'll have to check this out. Thank you. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 17, 2013 Author Share Posted January 17, 2013 Thank you for all the hugs and prayers. I'm not responding to every one individually but I have read them all. Quote Link to comment Share on other sites More sharing options...
Reflections Posted January 17, 2013 Share Posted January 17, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Liz CA Posted January 17, 2013 Share Posted January 17, 2013 if you think it would help the doctor to see it in progress, then i'd go. sometimes a visual is way more effective than a narrative. meanwhile, we'll pray. ann This is what I am thinking too. Quote Link to comment Share on other sites More sharing options...
Faithr Posted January 17, 2013 Share Posted January 17, 2013 Praying for you Jean. Quote Link to comment Share on other sites More sharing options...
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