I'm so tired of being tired and in pain!!!!

So for the last 3 months I have been dealing with sever pain throughout my body that feels like I've been in a boxing match and have muscle soreness all over my body, but the soreness is so bad that all I can do is sleep to keep from feeling it. And it seems like it's flares of this pain because I don't always have the sever soreness as I do other times. Like this past weekend I spent two days in bed because I couldn't move without hurting. My PCP has has me go to so many referrals, one for pain management; they couldn't tell me what was wrong and wanted me to do an MRI and physical therapy thinking it may be an issue with my sciatica I had over 20 yrs ago. I know that isn't is. I then was referred back to my Ortho Surgeon because I complained of numbness and pain in my hands, and I have carpel tunnel. I already had Carpel Tunnel Release Surgery in my right hand in Aug 2016, and when going back have it in my left hand and still in my right. I got the surgery for the left a few weeks ago. Then I get a referral to the Rheumatologist, they took blood work and say I have no labs that indicate Lupus and no muscle inflammation.

So, this is what I want to know, My Sed (ERS) and CRP rates are elevated, and stay elevated with each blood test, my platelets are elevated and I am Vitamin D deficient significantly. My ANA is negative each time, but I keep getting these flare ups of pain for a days and then aching pain the remainder, I am in constant pain and no one can tell me why. I'm crying all the time now because I am so tired of this and I just want someone to help me. I can't do daily things like clean my home, laundry, dishes, the lists goes on. I am a single mother of two boys that are at the age of needing me for everything right now. I have bribe my mom to come and help me with house chores or at least do my dishes, so that doesn't get out of control. I just want whatever is going on with me to be diagnosed so it can be treated so I can get my life back. Oh, and I have been battling fatigue. I get so tired from just picking up toys some days, and forget when I have to go to an appointment of grocery shopping. Once I'm back home, that's the end of my day, I conk out. Can you have the blood test results I have and possibly still have Lupus that they just aren't seeing. I don't know what to do or what to ask, I feel like all these doctors are doing is taking my money and pushing me off. But this is real to me, I feel it and I know there is something really wrong.


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18 Replies

  • I'm no doctor but I hope they are giving you Vitamin D supplements. You need 5000iu a day to recover. There's a lot of research out there pointing to the terrible impact of deficiency. Then, if you get normal levels of Vit D, they might be able to work out what's left.

  • I have been on Vitamin D for 8 weeks, buts that's all. Going to have that retested.

  • You are not alone, there are many of us who go through the same pain and negativity from those that treat us. You can have RA without your bloods indicating so. I too get exasperated by having my blood taken only for them to come back fine. I know It is soul destroying but try to keep your chin up.

  • Thank you Lesjames.

  • Hi mskeki

    Sorry to read your having such a tough time with pain and tiredness. Very hard specially as your a single mum!.

    What I'm wondering is have you been offered any treatment like steroids to help?. You can have short courses to see if they work. They will if pain is inflammatory and yours is with a raised ESR so consistently. Carpal tunnel is also inflammatory and can return even after op sadly.!. I'm also interested in your consistently raised CRP. This would only happen in lupus if you have an infection. Otherwise in lupus it stays stibbornly normal despite a flare!. It's a particular feature of lupus. So it may be you don't have Lupus but another CTD.

    I hope you feel better soon. X

  • Thank you Misty14. I have not been offered any treatment really yet. My PCP prescribed Cmybalta, but my psychiatrist took me off that immediately and put me on Seroquel. My PCP also pres. Gabapentin, to use until my insurance authorized the Cymbalta, but I never started it because the Cymbalta came through. So no treatment yet, and the PCP wanted to also wait for the results from the Rheumy.

  • hi mskeki

    Hope the seroquel works. It does sound like your getting the run around from your doctors. Your from the States?. Gabapentin is used mainly as a nerve painkiller , can be very effective. I have been on it a long time now!. You have to keep fighting and telling your doctors your symptoms and eventually they'll get the message!. Are you due to see your Rheumy soon?. That can always be brought forward. I do hope you improve soon. X

  • I have seen the Rheumy. My blood work came back with no labs that show Lupus, but my CRP and ESR rates are still high with each blood test I take. I am going to speak with the Rheumy tomorrow and see if it is Fibro, so they can start me on some type of treatment for this.

  • Good luck mskeki when you speak to your Rheumy. With high CRP and ESR I don't think it's Fibro as that denotes inflammation!. Interesting what he says. X

  • So it couldn't be Fibro either? I'm trying to figure out what I should be asking, and since the Rheumy says no labs that show Lupus, I don't know what is going on. Oh, I also have this rash on my upper right arm that started out as a small cluster of bumps then spread into an oval cluster about 3inches on that arm. My PCP, when first saw it says it was just dry skin, then when she saw that it spread, prescribed steroid cream. Now I'm wondering if that ties in to all this as well. So do you think I should press the issue about what I am going through as Lupus? I mean the two labs do keep coming back elevated and with the Vit D and platelets, seems like they would want to explore that. IDK. I'm on mood stabilizers and still so depressed because this is taking so much of my life from me and my boys.😥

  • mskeki,

    What you are describing sounds like it could be Psoriatic Arthritis. Very debilitating and doesn't always start with much skin involvement. My dtr has this so I know how much pain she is in. Her labs were all normal except her CRP.

    Tracy from the USA

  • Hi mskeki

    There are other connective tissue diseases other than lupus that have inflammation as there base!. It's interesting you've developed a rash. Good idea to take a photo of it and show your doctor. Maybe also a referral to a dermatologist might be a good idea . There are a lot of skin problems that can be diagnosed like psoriatic arthritis . Those consistiently high inflammation markers are significant that something inflammatory is going on. Good luck. X

  • Mskeki, I am so sorry to hear of your issues and the run around you are going through, it is such a familiar story to me now and isn't that sad? I have heard it so many times from so many people and I lived it myself or something very similar to it.

    I got sick in 2007, at first this strange fatigue that would come out of no where and it felt like my arms and legs became wet sandbags I could hardly lift ( does that sound familiar)? The next year, the deep aching in my muscles, especially my upper arms and upper legs. The pain would ache and feel like muscle spasm... the pain also felt like it was deep all the way to the bones. I would sit and rub my legs and arms in bed just trying to help relieve the pain.

    Fast forward 10 years I still get the flares and have the same issues. My bloodwork finally showed an ANA titer of 1280 and other things... Sed rate... I was diagnosed with Unspecified Connective Tissue Disease in 2009. It took 2 years. The Rheumatologist said he thought I had the beginning of Lupus and put me on Plaquinel. I was also getting monthly steroids shots for awhile. In 2013 I got a very severe flare and got other symptoms that they my PCP and Rheumatologist told me were another connective tissue disease and the butterfly rash appeared, mouth sores, nose sores, my eyelids and knuckles turned purple (something about small blood vessels breaking). I got chronic bronchitis with high inflammation in my airways for the first time. So I got a pulmonologist and inhaled steroids.

    It has been a roller coaster ride at times and over the 10 years new things have popped up.

    For me the Auto immune diease has taken a long time to present itself in new ways and it has been slow. Frustrating but actually better than it hitting hard and fast... I know many have had the same issue.

    I remember how frustrated I was in the beginning and scared but they did watch me closely, repeated blood work often and eventually it started showing them more and more. I only tell you this so you know many go through this just because of the way the disease develops.

    I hope you do not have Lupus or Connective Tissue Disease but if you do it will eventually let you know and there is no cure. They can help control the disease and relieve symptoms but sometimes we have to do the best we can with symptoms coming and going.

    The good news is there are many things you can learn to help yourself but make sure you check with your doctor about it and there are treatments that help control the disease much bettet these days.

    I sit in warm baths to help the pain, avoid stress as much as possible (I know that is hard) but I love relaxation CDs, rest as much as I can, light exercise that I can do, stretching exercises, trying to eat more healthy food and staying away from junkfood. There are many other things.

    This is a wonderful site and you are not alone with having the symptoms you do, many people on here do and understand how hard it is.

    Keep following up with your doctors and let them know of any new symptoms. It is frustrating but don't give up on them because they are important and as frustrating as it, as long as they are following up with you sometimes they are limited because our bodies are slow to give them all the information. Maybe saying the diseasevis slow to do so.

    Hugs Tammy

  • Thank you very much Tammy for sharing your story with me. I am working on keeping my stress levels down, but as you said, can be difficult. It just really dawned on me too, that stress is a big factor in my life, not only being a single mom, but one of the two children has Autism, and that comes with its own set rules and coping skills. I just want a name to what is causing me so much discomfort so it can start to be treated.

  • Maybe you have fiber myalgia there are no tests to confirm it but it's usually what they diagnose you with when they rule out other diseases I know they often use meds for nerve pain such as lyrica

  • I was thinking that also, but another forum member suggested it may not be due to the elevated ESR and CRP rates. IDK.....I just know that I am in pain more than I am not and if I sleep anymore than I have been due to being entirely exhausted, then I shouldn't have a life. This is consuming everything and just simple task are hard to do feeling like this almost everyday. I am waiting to speak back with my Rheumy to see what we can do and narrow down what all this is. I just want my life back!!!!

  • Hi mskeki,

    It may be worth also posting in the Fibromyalgia community on here to see what they say? You can join at healthunlocked.com/fibromya....

    Usually in lupus we would expect to see a raised ESR with a normal CRP. If the CRP is also very high then this implies something else may be going on, usually an infection. ANA is positive in around 95-98% of people with SLE. Your test results may not necessarily rule-out lupus completely because it does present different in everyone, but it may not be as likely as some other possibilities. If you'd like more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

    What is your doctor's next course of action?

  • Thank you Paul. I just got a detailed evaluation from my Rheumy on what could be going on. She says that I may have Fibromyalgia and my elevated CRP may be due to my recent surgery (carpel tunnel release surgery on Apr 3, 2017), that could make sense, but this is my 3rd elevated CRP. But she only suggested cardio exercise to help with the pain and work on sleep. Funny she says work on sleep, because that is all I have been doing since I have been experiencing the exhaustion. I may need to be looking for a new Rheumy, sounds like she won't be treating me ongoing. But at least there is a diagnosis now that I can go from and get this all handled. I will check out the Fibro group as you suggested. Thanks for all the help.

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