I want my life back😩

It's been 25 years with chronic pain and now too much to take. I was initiated diagnosed with a mild case of Lupus, then Fibromyligia and NOW seronegative RA. I am arrived at this point where I can't function mentally and psysically anymore. I have become so drepressed about the deteriorating condition. My hands, feet and recent neck and shoulder pain take over my life and I had been trying to manage pain by exercising but it isn't enough. The MRI shows also severe degenerative disc desease C5-C6 and they say the neck and shoulder pain it isn't related to the RA which I am not certain of. I listen to the way I feel and that tells me that some illness is attacking my spine and it feels like I am being slowly poisoned. I have had 2 spinal nerve blocks with little improvement.

I had been on Gabapenin for 3 years that helped for sleeping but the PAIN during the day is REAL and unbearable now. My Stanford Rheumatory Doc has tried Predinisone (no benift😭) now I got my first injection of Humira (nothing yet😔) I read some patients get immediate response and some within 2-3 month)

I just want to move beyond this pain progression. I am a busy mom of three kids (7,9,12) and was looking forward to get back to work (which I have to re-design according to my limitation) as it isn't only a great pain distraction but a human right and dignity to be able to have access to a career path again.

Being a chronic pain patient not only are you a guinea pig of trial and error drugs for years but you are disconnected socially and occupationally disadvantaged. There are a lot of limitations living with the chronic condition but there has to be a platform for those individuals to reconnect and find employment that has flexibility and is rewarding. I would look forward to anyone for great suggestions and ideas.

I am a physically strong trying to manage my health to the best ability however the mental exhaustion and challenges take a toll and I am asking for help.

I came to to country on my own 30 years ago and put myself through college. I have 3 degrees and worked in retail buying, also in p/t medical sales. Besides focusing on my family my biggest interests is teaching kids art and German. I am an artist and enjoy organizing parties/ events.

19 Replies

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  • Iwantmylifeback,

    First, I'm so sorry to hear what you're going through. And with 3 children, cause that's a busy and demanding life in itself. ❤

    Sometimes the mainstream medical profession doesn't have all the answers and it is trial and error. Have you looked into functional medicine? Fibro M and Seronegative RA are autoimmune diseases. Functional medicine doctors work to get to the root cause of AI's instead of just slapping a med over them. Although I understand the pain factor and you need relief too.

    Are you in the states or UK?

    Stella

  • Hello Stella,

    Thank you for your reply. I am in the states and it is so hard to navigate though the medical community here as everything is about sales and less focus on finding any connections to the root of the illness. I am originially from Germany and contemplate to spend time and get others treatment programs in Germany. It demands a lot of coordination (getting health insurance in Germany and figuring out family stay) What is your experience with functional medicine?

    How has it helped you?

  • Hi,

    Unfortunately my insurance will not cover me outside of my state I live in Kansas. I have BCBS Obamacare. But I've researched several avenues of functional medicine, found Dr. Mark Hyman who is one of the top doctors in this vein of practice.

    The UltraWellness Center in Lenox MA. is where he practices and teaches. (413) 637-9991. There are 2 other clinics, one in Ohio and another in New Mexico. The doctors in those centers practice Dr. Hyman's protocol for getting to the underlying cause of AI's and working up from there.

    Google Mark Hyman and watch some of his videos or read a few articles about his methods and clinic.

    I wish I could go to his New Mexico clinic, or the Ohio one. Not sure which one is closer to me. But I simply don't have the money.

    I know when you're experiencing the level of pain you are right now, starting over with something unconventional can be disheartening and frustrating to say the least. But, it is a hope. And from what I've read and watched (video interviews) some are getting better through diet as well as medication and more.

    Stella

  • Also... I have Seronegative RA too and PBCholangitis. I'm take Ursodiol for PBC and Sulfasalazine for the RA although the Sulfa hasn't worked on my wrists and hands. It has helped my knees and ankles.

    I try to eat a liver friendly diet as well as an anti- inflammatory diet for the RA. (Found those through Google) but, I haven't been very strict lately... It's hard.

    I don't have any children, I'm married 29 years, and I just turned 58. I was diagnosed with PBC last Oct. And the RA just this past April. They say it takes Sulfasalazine 1-3 months to work. I'm on my first month. I can't take methorexate or humira etc. because of my liver AI.

    Stella

  • So, so sorry. 25 years of pain is an unbearable amount of time to even think about. I am about 2 years in from initial symptoms leading to RA dx. The only thing that has helped me along the way is taking some control of my treatment and listening to my body. I talked my Dr into reducing my meds (now at 15mg. per week of Methotrexate-tho sometimes take 10). I got rid of gluten and all dairy- was already vegetarian. I take flaxseed oil, folic acid, vit D, Boswellian (turmeric) and tart cherry to fight inflammation. I exercise as much as possible.

    For pain - and the depression that comes with it- I take Kratom. It is wonderfully relaxing for the body but also energizing in the right blend. (Site I trust to purchase from:

    KratomTrading.com

    I do not know how I would get thru the day without Kratom. I believe your pain must be much worse than mine. But it may make general pain and mental relaxation possible.

    And help to get through working and moving.

    I also researched and found a few studies showing Zoloft- or Sertreline- effective in reduction of inflammation and its pain. It is prescribed usually for depression (also caused by inflammation! ) My primary was fine with me trying it and I am on 50mg a day. One thing I noticed right away was that I sleep much better.

    From posts here I am about to try hemp oil. Also for pain. My goal is to get myself completely off MTHX for good. Hoping the hemp might help with inflammation too. .... I wish you all the best. I can only imagine the heaviness of waking up every day with the amount of pain you must have. It is very isolating. Any thing to reduce it even a little can help break that isolation.

  • Thank you for all the helpful suggestions - I am going to follow your advise and will consider taking Kratom.

    I am not human anymore and something ought to work.

    Just like you, I cope by going to the gym to get relief for the day.

    Thank you again....that was so helpful!

  • I am so sorry to hear about your health challenges as well and have never heard of PBCholangitis before. I have literally parked myself at Stanford medical for 3 years now and had a 25 year unspecified autoimmune diagnosis.

    I do feel I am falling apart as well. I am navigating through specialists as well as the financial pressure THUS I need a flexible job and money making revenue stream.

    I am assuming Mark Hyman doesn't take insurance? At this point I would also need to work with a therapist that is trained in pain management for coping.

    None of the antidepressants and meds have worked ....and all I hear is be patient ( 25 years!!!! Is a long time)

    Are your meds working or making a dent?

  • Hi,

    The ultraWellness center does take insurance. It's only "my" Obamacare that only covers me in my own state here in Kansas.

    PBC is an AI where my own body is attacking my bile ducts. This in turn causes liver damage. It's a slow progressive disease. With the meds for it it's even slower.

    As far as my RA, I'm seronegative RA and the 2000mg of Sulfasalazine has helped some. It hasn't helped my wrists and hands. It has helped my knees and ankles. So, I'm dealing with pain there and inflammation in my mid spine causes nerve compression that causes burning pain on my upper sides when I bend forward. It's horrible. That has gotten better some, but only after taking Gabapentin.

    I have dry eye and dry mouth. Both are an annoyance. I believe those are RA related I hear.

    Most days I can manage. But, right now I believe I'm in a flare. I dread taking prednisone as it's not good for my liver.

    Stella

  • What you are going thru is awful and for such a long time. I hope and pray that the humira works for you. It can take some time from what I understand . You sound like you have many talents and I hope that you are able to get some type of work that is satisfying and not too physically challenging

    Last week I attended a full day program dealing with autoimmune disease and inflammation. I never thought much about the diet being a big factor but the leaky gut as the cause of many of these AI conditons started to make sense. I am eliminating all processed foods, eating a lot more fruits and veggies, increasing yogurt. Have not gone gluten free completely but cut way back on that and dairy other than yogurt. Will see if it helps. I started cimzia (biologic) a little over a month ago. It has helped some but is bothering my GI. I also have crohns.

    I hope you can continue with your art and teaching the kids German.

    Please keep posting and let us know how you are doing . I am trying yoga, maybe you could try gentle yoga and meditation. Best wishes, Gloria

  • Thank you Gloria,

    Those kind words of yours were very encouraging and comforting.

    I have been on a mostly plant-based diet for 2 month now. Cutting out most animal related food (with some chart days) and the adjustment isn't real difficult.

    I added in some 2x week accupuncture and currently the only thing that works is slepppung myself to a 60 minutes cardio class 3x week, so by the end the endorphines kick in and I feel less pain pressure. My veins feel like the exploding otherwise especially in my hands and feet & neck/ shoulder area.

    The accupuncture helped yesterday to distribute some pain (I felt a small shift) and she suggested to go on a 2 week liver detox shake and supplement regimen. I am going to give it a try.

    Anyways, we will see with the 2nd Humira injection next week - so far nothing.

    I am also wondering why none of the meds have worked for me, no antidepressant, nor prednisone ....and now Humira...it is a strange search!

    Wishing everyone strength and more than just glimpses of joy. We all deserve it.

  • I have read that accupuncture can be quite helpful for RA so I hope that continues to help you. Doubt Humira works that quickly although some do claim to have immediate results. So sad that it is a long trial and error to find the right medication for ea. individual with autoimmune

    I do believe our health care system is very good in the US. It's just so hard to find the right med or treatment plan. But I would certainly explore the trip to Germany and see if they have something better to offer you. Let us know how things are going for you. We can all help ea other with support and suggestions

    Gloria -I live in Massachusetts so plenty of good health care in this area

  • Have you heard about LDN? For many helped to manage pain and RA. More info here.

    ldnresearchtrust.org

    Hope you find something soon to ease your pain. Nothing can be more demoralizing and exhausting as constant pain😓

  • I went vegan for the last 6 months now and haven't had any pain or swelling! Remission is possible without medication! I am a very strict pescetarian now and I'm happy that I have my life back pharmaceutical free!

  • Hello - that sounds encouraging but how long have you been in chronic pain/ RA and have you been taking all kinds of trail and error meds?

    Did any meds help you? How long did it take for you to start feeling better on the vegan diet? What do you think was the key element in feeling better by changing your diet?

  • Yes I have taken many meds.

    Plaquenil has worked well but was causing a black dot in one of my eyes so I stopped taking it and started eating well. I was diagnosed in 2015. I had it really bad I couldn't sleep, brush my hair, fit in my shoes, open bottles and on and on. Since January 2017 I've been drug free and pain free and I DO have my life back.

    I can go on a 6 hr hike to a waterfall and not be scared of pain and inflammation!

    I am extremely strict with my food I only eat what I cook and I cook with onion, garlic, ginger, curry and turmeric. I drink Cashew milk with turmeric also. Diet plays an extremely big role in managing my pain. Hormones also have an effect on pain and inflammation. But the right diet helps balance hormones.

  • Hi - thank you for your response and sharing your experience. What was your diagnosis?

    I have had pain in both feet, hands for 25 years and dice 8 years neck shoulder and spine pain.

    I have changed my diet as well but don't feel any big difference :(. How long has it taken you to feel a difference?

    Are you eating animal products at all?

    I wish there would be a roadmap.....I radlly don't understand that no doctor, no med, no diet has been improving my symptoms or do I have a complete different AI illness?

    Your story however is so encouraging.

  • I cannot stress how important it is to do your own research! My diagnosis is RA - high c reactive protein and lupus

    I have had pain and inflammation in every joint you could think about. I wanted to end my life! So I did a lot of research.

    When I said strict with my food I meant it. I cut everything out my diet and ate steamed rice and veggies. Not every body is the same what you have to do is let your body tell you what to eat. Gradually add foods back into your diet and see what happens.

    I had taken a Health and Wellness class which was mainly about nutrition taught by a nutritionist. This class helped a lot with the transition and God helped me say no to pizza!

    And yes absolutely no animal byproducts in food and products I'd put on my skin/hair.

    I have been able to add seafood to my diet without symptoms!

    Give your body at least 1 week with a new food.

  • One more question how long did it take you on your new diet to feel better?

  • Sorry for buddying in😊I was really amazed by the effect of AIP diet! I had quite an aggressive start on my RA but after 3 months 80% of the symptoms of pain and brainfog were gone. And totally so, couldn't believe it to be true😊

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