29 Comments

  1. I am sorry that you are going through this, praying for you. I had a friend suffer through rheumatic heart disease from childhood with similar symptoms maybe it is something you can ask your rheumatologist to check

  2. There is a relatively new specialty on medicine called Functional Medicine. It uses a systems approach and looks at everything in a patients life, not just the symptoms, and sees the patient as a partner. Just google Functional Medicine Physician in your area.
    Hope this helps.

  3. Hmm our bodies are funny things. I had terrible back pain, like charlie horses in my spine, until my sister (who is a doctor) no joke told me to walk with my butt sticking out more because my spine wasn’t aligning properly. I haven’t had a back cramp in two years and I was even pregnant during that time!

    it’s so important to find a good doctor that you feel like you can trust and that will listen to you. I asked my sister about you and she said based on the age of what your pain started she would be suspicious of a hormonal cause to to your pain. I know my lady hormones cause hidden varicose veins in my legs and all around my uterus to painfully swell during ovulation and my period which is soooo wonderful.
    Either way I’d definitely suggest finding a female doctor who will be more understanding towards what your body has gone through and can look at your body more holistically. My sister suggested journalling your pain which will really help to pinpoint causes or patterns to your pain and to be sure to include your mood before, during, and after episodes (I guess sometimes depression and anxiety are solely manifested as physical pain).

    I’m so sorry you have to go through this ?. Best of luck!

  4. Please forgive me because I know you don’t want medical advice. Each of the possible causes you listed are all symptoms of Lyme Disease. And I get the suffering and the not knowing and the trusting in God and feeling like I don’t trust in God when I discuss/complain about my pain with someone else but I can honestly say the pain has brought me closer to God, deepened my faith, and made me more aware of the fact that just because you can’t see someone one’s pain it doesn’t mean it’s not there. Sorry for the rambling.

  5. I know how you feel. I went through a terrible pregnancy full of serious health issues, pain to the point where I could not move or touch things. I couldn’t take care of my kids…it’s so hard. And everyone said “It’s because you have three kids and your body is spent”. Thank you for reminding us to offer our pain and use it for another’s good!

  6. I would feel your pain, except I’m a tad whelmed by my own. ;-) I also started symptoms at around age 13. I wasn’t diagnosed until I was 30 … the week of my birthday in fact. It was the answer to many tearful prayers for “a name, just a NAME.” Environmental Illness/Multiple Chemical Sensitivity. The list of symptoms I submitted to my doctor was a full page, single spaced.

    My Clinical Ecologist (specialist in Environmental Medicine) said that, based on my medical history, I had been disabled from the time I was 20, which I gotta say, made me feel like a SUPERHERO. Despite losing half my sophomore year to illness, I completed my Bachelor’s degree on time and with a B+ average, then worked for two years, then did a year of a Master’s program, before ill health forced me to drop out of school for what I thought would be a short break. Meh.

    I turned 62 earlier this month, so 32 years exactly since I got some kind of effective treatment plan going. I was married and had 2 girls by the time I was diagnosed. The girls and the hubby were quickly diagnosed with their own food and inhalant sensitivities, which made parenting more challenging, but kept me from feeling isolated, at least within my nuclear family. Our extended families on both sides were less than supportive, but it was 32 years ago. Lots has changed since more and more people have learned what it is to be sick and in pain with no surgery or pill to fix it.

    I had another daughter … God’s idea, not mine! In addition to my problems, we also had rH disease to contend with. God gave us a miracle. Even the doc said so! But it took me about five years after the pregnancy to get back to where I was when I conceived. And I wasn’t able to care for my kids again. They were either in day care, school, or I had a babysitter or husband or girlfriend with me.

    In the past 18 months, I’ve made two discoveries that have really helped me a LOT with my physical symptoms, so I want to pass them on.

    One is fermenting. The prevailing wisdom when I was diagnosed was that there was no way to stop an overactive immune system. Now they know better. I’ve been recording my experiences with fermenting @ https://www.facebook.com/christine.bravomom/media_set?set=a.434744026673811.1073741905.100004146523282&type=3.

    The other is paying attention to pH which I wrote about @ https://polination.wordpress.com/2016/04/24/paying-attention-to-ph/.

    I used to 24-7 take max doses of acetaminophen AND ibuprofen AND chlorpheniramine maleate. I think I may have taken one Tylenol last week. I’m not pain-free by any means, but the roar is down to where I can cope.

    I’ve also found essential oils really helpful. https://www.facebook.com/christine.bravomom/media_set?set=a.230556967092519.1073741856.100004146523282&type=3

    Prayer has always been my mainstay; I’ve offered up loads of pain! But you already know about that. :)

  7. I would strongly suggest getting tested for chronic Lyme disease. You need to do the research to find a Lyme literate doctor first. Igenex lab in California is a good testimg lab. Find the Lyme association in your state and you should be able to get some good referrals from them. My sister was diagnosed with chronic neurological Lyme about 18 months ago. She is married with six kids and so I know the challenge of chronic illness and raising kids. ilads.org would be helpful to start.

  8. I have never responded to a blog before but my heart went out to you as I read this. I have been dealing with this kind of pain for a year at least and have been doing the rounds of doctors who are only interested in one part of your body. It is so frustrating and humbling. I finally resorted to the Internet looking for anything that could relate to my problem. Beware..it consumes you and you begin to think of yourself as a hypochondriac but I found the symptoms..My haematologist reluctantedly listened and agreed it could be a possibility. In my case the culprit is polymyalgia rheumatic .Look it up…The antidote is prednisone which is scarey but if the pain has not left your body in one week it is discontinued and you go on with your search. It is worth the try. The relief is instant. Sometimes it seems we have to do our own research. I wish you the very best..and yes I rest in a loving God who will love us through all these trials.

  9. Have you ever prayed the Servite Rosary (also known as the Chaplet of Our Lady of Sorrows)? I just discovered it recently and it’s a great way to focus on offering up suffering by uniting our pain to Our Lady’s seven sorrows. I’ll add you to my growing list of people for whom I offer up those small daily sufferings.

  10. Praying for you. What a hard, really hard burden. Thank you for sharing this, as difficult as it was! xo, friend.

  11. Fibromyalgia sufferer here. It’s a diagnosis of exclusion and the medical profession is kind of at a loss to deal with it. I’m currently fighting with my PA about prescribing my meds for it and am having to see a rheumatologist next week.

    Everyone is giving you the advice to have them do a full thyroid panel for blood work and I think that’s a good plan… but see if your doctor will do a rheumatoid panel as well and give you a referral to a rheumatologist. They deal with joint issues and if fibromyalgia is a possible culprit, they deal with that as well.

    Treatment for fibro is actually pretty holistic. They can put you on Lyrica (specifically for fibro) or Cymbalta which might help as well. I’m on Gabapentin which is the stuff they prescribe for nerve pain and it’s the only thing that has touched my fibro pain because fibromyalgia is rooted in the nerves of your muscles. (It’s why stuff like Vicodin or ibuprofen don’t work effectively — they’re the wrong kind of painkiller.) I’ve also found that exercise (for me, walking) helps as does massage to deal with the joint/muscle issues.

    This is a pretty good article on the condition from a doctor who has it: http://everydayhealths.info/im-a-doctor-with-fibromyalgia-heres-what-i-wish-people-understood-about-it/

  12. I really get this so much, and honestly this is what I appreciate so much about bloggers. I know it feels vulnerable to put this out there, but it truly helps others. There are a few of us out here reading, going “YES.” And knowing others are there makes us feel some solidarity. I second the gut health and the testing for autoimmunes and the chiropractic and acupuncture. And just in case it helps I will share that my sister was just diagnosed (in her late 20s) with a juvenile form of RA. She had pain and fatigue her whole life but wasn’t diagnosed until now. Managing autoimmunes is hard :( but there is healing ahead for you Carolyn!!! I will pray that all of the pieces come together for you soon!!!

  13. I am a 31 year-old and a mom of five—ages six and under —with a special needs child. I have also been experiencing chronic pain for many years. I can really relate to your post. I know how hard it is to get through the day with constant pain, especially while caring for little ones. After failing to receive a solid diagnosis for the cause of my pain (fibromyalgia was suggested as a possibility), I began seeing a chiropractor who focuses on eliminating “subluxations”. It has changed the way I view health and wellness and has improved my pain significantly. In fact, my entire family now see this chiropractor on a regular basis and we have seen a very significant reduction in illnesses, asthma symptoms, etc. among the little ones as well. I highly recommend going this route! God bless you!

  14. I’m so sorry you’re dealing with this Carolyn. It’s a big cross and you have such a beautiful attitude. Prayers that you will find out what’s going on and that there will be things to help you with it. Sending lots of love!

  15. Carolyn!! I’m so sorry you’re going through this and will be praying for you. What a beautiful perspective you have on it that becomes so very redemptive. Father John Riccardo uses the phrase “suffer well” that I’ve tried to get to stick into my head. We can waste our suffering or we can use it for something glorious. When it comes to someone else suffering, it’s so easy to want to talk them out of it or give them the answer we think will take it all away. Or if we can’t fix it, we avoid them. BUT that also deprives both the chance to enter into something deeper and so very sanctifying. But so very hard, yes. Thank you for sharing your witness and the encouragement it is to enter in and suffer well.

  16. My daughter was diagnosed at 4 with systemic idiopathic arthritis. In many ways it sounds similar to what you’re going through. At her worst she couldn’t get off of the couch because it hurt so badly… It took 3 months of testing and wondering before she was diagnosed.

    Her arthritis can start damaging her internal organs if left unchecked, so we need to stay on top of it. We’ve tried to offer up our pain as well, but it’s difficult for her to understand. There have been many times I wished it was me going through everything instead of her. Thanks for sharing here, and I hope you keep us updated…

  17. What a beautiful post…. I do hope there’s a smart and caring md out there who can figure this out. Totally agree with you though that it can get annoying going to different specialities. It’s like: it’s not the heart, says the cardiologist. Or “bye, I can’t do surgery. So go away” says the ortho Doctor.

    I get the flip side of this where the primary Doctor or the other specialists punt it back
    To Neuro. It’s belly pain – ask your neurologist. You’re looking pale and dehydrated after vomiting and not eating, go ask neuro…. I just sometimes want to scream and say: this is not neurological. You have a viral infection blah blah. It has nothing to do with your seizure history…..

    Ok enough about me. This is about you. I pray that God will continue to give you grace and strength throughout this ordeal.

    xxxxx lots of hugs dear friend.

  18. That’s a hard road, I’ve been there, best wishes. Applaud the spiritual insight.I had Chronic fatigue + arthritis at 33 gone by 34 after much research. Short answer cod liver oil shaken in milk. Yours sounds autoimmune + overactive immune system. suggested reading Gut and psychology syndrome N Campbell- McBride there’s 2 phases of immunity 1 active and 2 calming. Leaky gut =>1 Good microbes => 2. Inflammation also helped by ginger turmeruc fish oil etc. Wheat Belly W Davis it’s not just gluten that causes leaky gut there’s chapters exactly on your symptoms. Best wishes

  19. Thank you so much for sharing. I feel your pain (literally). I’m 36 and was diagnosed with lupus about three years ago. Shortly after my 2nd child was born. Sometimes even blinking hurts. And the fatigue….to say you feel like your carrying a bag of bricks around your neck is a total understatement. The bad days are a real struggle. But it makes me that much more grateful for the good ones. And you are so right. You have to put your pain to work. For me, I feel like this was the only way I was going to stop and acknowledge His greatness. To come closer to my creator and savior. A lot the things you wrote about I swear I talk about with myself thru out the day. Because I’m always afraid to talk about it with my husband or family. Afraid they won’t understand or think I’m crazy. They already don’t understand why it’s so hard for me to take pain meds. So thank you again for sharing. I know it’s terrible to think so many people are suffering with chronic disease or pain thru out the world. But in some way it also brings comfort to know you are not alone. And I have so much faith that something beautiful will come from this suffering. I will pray for your healing. And for your strength as well.

  20. You don’t sound crazy to me — this is a beautiful witness, and an excellent reminder about the nature of earthly suffering and the benefits to our eternal souls, if we do suffering right.

    (That said, I do hope you feel better soon! It seems to me that once you “get” the point of suffering you should get a hall pass! I’m praying for you.)

  21. RA is actually pretty common in younger folks, so not a bad idea to check that out. Autoimmune disorders tend to hit people when they are younger rather than older. I’m at risk for it – 2 autoimmune diseases + years of steroids = more bad things. Pain all over along with fatigue, my first thought is Chronic Lyme. very hard to diagnosis and very hard to treat. I have Hashimoto’s and if it was just fatigue, i might lean towards something thyroid-y. have you ever had a full thyroid panel? it’s 7 different tests, also good to check DHEA, vitamin D and Iron levels. any insufficiency with those can lead to massive exhaustion. But the chronic pain, especially the sheets comment you made, leads me to fibro, some sort of chronic nerve pain/chronic fatigue or chronic lyme. possibly even some combo of the above.

    Thankfully, there are lots of ways to treat chronic pain without opioids. Best to get to the root of the problem and go from there before worrying about medication options. God can steer us in directions we may not have chosen by virtue of taking away all other options. shutting doors and opening windows as it were. :)

    Also accupuncture is amazing for chronic pain, it helped immensely when my IDB was really bad. As does meditation in general, (turmeric and curcumin are good alternatives to advil as prolonged NSAID use is not so great for your health either.) And I cannot say enough good things about a good Chiropractor. Finding my current Chiropractor has saved me a lot of chronic pain, stopped my migraines, and even rid me of my chronic ear infections. Let me know if you want info on my guy. He’s so amazing and kind and on the East side of Cincy.

    I’ll be praying you find some answers and some relief.

  22. RA is actually pretty common in younger folks, so not a bad idea to check that out. Autoimmune disorders tend to hit people when they are younger rather than older. I’m at risk for it – 2 autoimmune diseases + years of steroids = more bad things. Pain all over along with fatigue, my first thought is Chronic Lyme. very hard to diagnosis and very hard to treat. I have Hashimoto’s and if it was just fatigue, i might lean towards something thyroid-y. have you ever had a full thyroid panel? it’s 7 different tests, also good to check DHEA, vitamin D and Iron levels. any insufficiency with those can lead to massive exhaustion. But the chronic pain, especially the sheets comment you made, leads me to fibro, some sort of chronic nerve pain/chronic fatigue or chronic lyme. possibly even some combo of the above.

    Thankfully, there are lots of ways to treat chronic pain without opioids. Best to get to the root of the problem and go from there before worrying about medication options. God can steer us in directions we may not have chosen by virtue of taking away all other options. shutting doors and opening windows as it were. :)

    Also accupuncture is amazing for chronic pain, it helped immensely when my IDB was really bad. As does meditation in general, (turmeric and curcumin are good alternatives to advil as prolonged NSAID use is not so great for your health either.) And I cannot say enough good things about a good Chiropractor. Finding my current Chiropractor has saved me a lot of chronic pain, stopped my migraines, and even rid me of my chronic ear infections. Let me know if you want info on my guy. He’s so amazing and kind and on the East side of Cincy.

  23. What a beautiful & much needed post (for me)! As far as the physical pain, I am so so sorry that you are experiencing this. I had something similar start happening this past fall, but recently underwent surgery for endometriosis (praying my symptoms will go away). That combined with so many general life sufferings at this time has been difficult for me and my husband. I have been trying (and failing frequently) to offer it up for so many that I know are bearing greater trials, but only with God’s grace. Thank you for this beautiful post and bringing to light that apostolic letter! I will for sure be reading it. And praying for you!

  24. Great post! I’m from New Hampshire so I can’t help but ask if you been tested for lyme’s disease. It seems to be the most common cause of unexplained awfulness around here. Maybe not relevant but just thought if throw it out there. My cousin was diagnosed with rheumatoid arthritis st 11 but a priest prayer over her avd had an Inspiration in prayer and told her mom to have he tested for lyme and it was. Sorry my comment isn’t related to the more important parts of your post.

  25. I read this and felt like I was sitting at your kitchen table while you talked and while going through your JPII (Thats a good thing).

    I do hope they discover the culprit. I can only imagine that the “not knowing” is just as painful as the physical ailments; if not, more at times. Until then, I’ll pray for your perseverance, my friend. May your suffering gain you all the graces and bring you closer to Our Lord.

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