Does anyone else feel the same way I do?

My name is Adrea. I am a 28 yr old female. I have been diagnosed with Sarcoidosis since '09. At first it was just the cronic fatigue, and the shortness of breath. Over the last couple years, it has created such a set back in my ability to function in every day routine. My Sarcoid has spread to my bones, and the pain I experience in my hips, (more so than anywhere else) Is at times un bareable! I can hardly walk in the morning. I cannot sleep comfortably, walking is dificult. The pain is enough to cause me to avoid the activities I use to enjoy doing. I am new to finding support with this. I want to hear from someone, anyone, who can validate my feelings with this disease. I have an app tomorrow to see about getting a referal to a pain specialist. I have tried Steroid treatments and Methrotrexate treatment. My body did not tolerate either. Infact the steroids had put me in the hospital, the reactions were so severe. I am just to tired of being in pain. I feel like this disease isn't taken seriously enough. And I feel more so judged by the dr's for being in pain, rather than validated and supported. Please share with me your experience, and recommendations. I need to feel as tho I am not alone in this battle. Thank you.

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You are not alone, we all can relate to what you are going through. I too feel as though this disesae is not taken seriously. I'm currently experiencing irregular heart beats that landed me in hospital for 24 hours and docs don't know whats going on. Going to see pcp tomorrow. I've been diagnosed seen 1993 when I was just 19 and it's been a battle ever since, so my advice to you is to stay strong and try to communicate with people who understands what you are going through. I come here on my good days for advice and support. Everyone here seems to know and understands!!! I hope you get the relief that you need from your pain and here is a hug just in case you needed one( I know I do on many days) :) you are not ALONE!!!!

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Andrea,
You are so NOT ALONE!!! sometimes you feel as though you just want to give up, but you can't.. Have your doctor check you out for Fibromyalgia and Lupus... all these have simular symptoms.. I just foun ut that I have Lupus along with Sarc, and Fibrmyagia.
Wishing you all the best...

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Yes, I understand where you are coming from. I was diagnosed at age 28 too, but that was many yrs ago. Its a shame but it true, most doctors just dont believe sarcoidosis causes chronic pain. Even worse there are doctors who just refuse to treat pain wether they believe patients are suffering or not. Its too complicated and controversial because of the war on drugs(patients). I hope your appt w/ the pain management doctor goes well. Dont hold anything back. Dont ask for specific medications but if asked tell him what has been successful or unsuccessful in the past. Pain can really destroy a persons life including mental health. Tell him/her how the pain is affecting your ability to function. My PM doctor has helped me to deal with the chronic pain by using a multifaceted approach. A good doctor will use many tools to help you deal with pain, not just give out pills. If you want to share how it goes I would like to hear about it, just add to your post. Good luck.

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I am so sorry the doctor's do not take your pain more seriously. I know there are pain clinics that deal with pain issues. I have been lucky, not a lot of pain. I did have severe pain in my back for a few months. We lived in WV at the time, and all my doctor's acted like I was a drug addict. Came down here to NC and got lortabs for awhile. Had to have a drug test, and sign a paper stating that I would only get the drugs at one location. I still have some pain in different areas of my body, but they can be controlled with over the counter medication right now. None of us want to take more drugs, but pain like yours needs to be treated.
Angela

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hi my symptoms stop with medrol i take that 7.5 months but when i stop them pains came back in 5 days. I did not hear my dr to stay in medrol therapy and start by myself moducare modullon supplements 1 year ago. all this year i feel good. tired feeling and pains gone the first 15 days now i stop moducare modullon 3 weeks and im good but start ayes problems again will see

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Hi Adrea. I totally understand what you are going through. I was diagnosed with Sarciod in Oct 2011 at the age of 59 but believe I have had it for sometime. It seems every day I wake up with a different pain. Recently it has been both hips and walking is a challenge. I also have Fibro and I don't know which pain is due to which disease. So far, my rhuemmy and pulmonary drs seem to be compassionate. I was trying not to let these pains interfere with my dailey activities but it is getting more difficult. After working 8 hours a day, all I want to do is go home and try to relax which is almost impossible. Since I am new to these diagnoses, I feel the worst is yet to come. I was hoping I was in the percentage that has mild symptoms and then they go away. My pulmonary dr says I have chronic sarciod and from what I have read, this could be a lifetime battle.

I hope you fine relief and feel better.

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It's 7:04am. And I have woken up drenched.. From head to toe.. Nice to know that this disease is lingering in my nervous system still.. NOT. I tossed and turned all night again. Appointment is in a couple hours now. I am so relieved to see so many of you! I tried to share the wonderful news with my partner, he is very thankful you have all come forward for me. It literally brought me to tears.. For so long I was so confused, I felt like I was going crazy! Nothing I discribed to the dr's was or has been taking seriously, so knowing that I have another app to try to explain myself again, doesn't put me at ease.. But seeing these posts, and knowing that you are out there, that puts my heart at ease.. Thank you all. I will get back on line after my app. and let you know how it goes.. Thank you again.

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I just came on today to see if anyone else was having this issue and there this was! I haven't been on in a while as my sarc is supposed to be in remission. But I have been dealing with back pain for over a year. All day. Every day. Some worse than others. Then my shoulder started. Now my hips. All I do is walk around and try and deal. At 1st I thought the back was from an old accident a few years ago. Then the shoulder started and my dr said bursitis. Now my hips. So then I thought back to the sarcoid and thought perhaps it might be tied together. I don't bother going to the dr cause he just give me pain meds which do not help. So I just try and deal. But, man, when does it end? I can't imagine going through life like this forever! Maybe they ARE tied together. Now....question is....what to do about it.

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I am so sorry for all of you. You do have to treat your whole body, physically, and mentally. I understand and feel you pain. Your post and really of your posts has touched me deeply. I have been diagnosed and living with it for at least 15 years and share your problems. The pain makes one feel crazy as you cannot get out of it. Right now I have weened myself off two powerful drugs, one of which was usually is reserved for cancer patients. I have to find a Pain Clinic , but I know they won't help much. Hang in there, if I can you can.
Marian

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The pain at times seems unbearable. Mostly in the mornings after tossing at night. I used to ride a bike 5 to 6 miles 4 times a week and swam everyday. Now I hurt 24 hours a day and have gained close to 80 pounds from 60 milagram of pred. a day for 5 years. Hoping now that I am off of it I can loose some of it but my Doc says weight gain from that is very hard to loose. My joints and small fiber nerves are my worst problems. Have it elsewhere but these cause the most pain. Hope that they can help you get yours under control.

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It really isn't fair that the one medication that can give relief is also the worst for weight gain. As if we don't have enough to worry about. My whole plan in this was to try not to have to take the pred and just use excerise and diet to combat the pain. I think I am losing that battle as the pain I have is on the brink of unbearable. i already weight to much and started a workout program back in early October, but now I have not been able to so it not only because of the pain, but I am just worn out after working all day. I have to count my blessings though because my children are grown and have their own families and it is just my husband and myself. I don't think I could do it if I had little ones at home. My heart goes out to all of those who are still raising their children.

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Its in my bones too. Sucks. I was recently started on Plaquenil, (generic) and Meloxicam (Generic for Mobic) Was feeling so much better UNTIL recently when they started upsetting my tummy. I quit taking them yesterday-if I had I would have just thrown them right back up anyhow- it was bad. Like stay in bed bad. I can deal with the pain, its been my companion for a long while now, but upset tummy....never have been able to handle that. Most pain relievers given just make me want to puke for 8 hours. So I just deal.
Today I will add the Meloxicam back in and see if it is the culprit. I hope not as it gave me the most relief I have felt in ages. Oddly not in my hips. Fingers, feet, knees, shoulders, back and recently my neck. But the hips are OK. Thanks to God.
I have only been on pred for a week when I was coughing up blood, it worked to calm my lungs down and even in that week I could see the horrid side effects, not being able to sleep, I stopped losing weight, (that has been the ONE good symptom of this disease-70 lbs so far) and they are worse than the disease-so far.
And yeah, you do have to curb some of the things you used to enjoy, I loved dancing-now impossible. Can't stand on my feet for long time or I am up all night in pain. Even with pain killers. But its my knees instead of hips.
But I started to swim and it helps so much. Its an exercise that almost anyone can do, and your weightless in the water. After the first few minutes of stretching out your joints it feels wonderful. It has really helped me to get my exercise so I am healthier, and its made me much happier too. Almost a zen experience, LOL What with the goggles, nose plug, ear plugs, and cap I can't hear or hardly see or be recognized. And it has helped to firm up the flab and extra skin from the weight loss. I recommend it. My club even has classes for arthritis sufferers and cardio workouts, so if you don't want to do laps you can do other things. Or you can make up your own workout, I am sure that you can find exercises to do in water on line someplace. Even just getting in the water can help with the pain level.
I wish we didn't have to deal with this, especially you at such a young age. But we do. All we can do is go from here. Learn how to best handle what is given to us, and live.
As for the not being able to walk in the AM. I do exercises to stretch out my joints before I even get out of bed. Other wise if I just stumble out I too find it hard to get to the bathroom. LOL Look like a 90 year old. But a few stretches and a bit of pain with the first few and I can then walk with less pain, and stay upright.
The best thing you can do for joints is to keep the muscles that support them as strong as possible. Thus when my back gave me grief I started on crunches, started slow. Did 10, then upped it slowly. I do 100 now in the am. It helps keep the sciatica at bay. As for my knees there is 3 that REALLY help, but I only do 75 of those each. I think that these are why its not so bad all the time. Probably why I was able to go so long on so little pain relief.
Good luck on your journey with Sarcoidosis. Sucks to be sick but its good to be alive.

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Hi Shadowsfire
I was diag. with sarc in my lungs 18 yrs ago. How was th sarc diagnosed in your bones? Drs. Say I no longer have it. I have also wen diagnosed with fibro. and atrial arrhythmia...which they have not been able to get the fibrillation under control. I have pain in my rt. hip and the pain goes down my leg. It feels like bone pain not muscle pain. I have many other symptoms, too many to mention here. I am going to find a dr. Here in the Atlanta area who specializes in sarc. tx.

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I hope the doctor today was able to help you. I went to a dr. years ago with severe pain in the upper part of my arm. He wrote it was because I use my cane on that side. I know now it was probably sarcodosis pain. I have to use the cane on the right because it supports my weaker left side.
Good luck
Angela

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I thought I already replied to this thread.
Is that Sarcx of the Neuro or was I gross
enough that someone deleted it?

I have been deleted out of better
threads than this.

I finally got so tired of the Chronic Pain
that I whined and moaned enough to
get RX'd 10mg Hydrocodone tabs. Also
take some Soma for relaxation of what
the physio's jokingly call 'muscles'. I
dew no that I had some because I have
pictures of my own bad self when I
finished basic training. That was a long
time ago and in a place far, far away.

I am so tired of this so-called 'way of life'
that I have told all my doctors that all I want
is to be as pain free as possible. If I get
lukemia or lymphoma (I used to have some
way-out lymph's back in the daze) I will
PROBABLY refuse treatment. Why go through
that misery just to prolong this 'Shitte (pardom my
Mid-German)' life? It is enough of a burden to
get through each day without ending up more
crazzier than I am now. Sooooo, no chemicals
or ray-guns for me. I am ready to go. Just make
it painless with maybe a touch of buzz. i really
don't mind dying. I just don't to be there when
it happens. Especially if it hurts. Hurtz Suckz.

Look at how I have carried on..
My bwain is so full of intelligential thoughts
that I need to get out to the world.
Tiz a burden that I do not take lightly.

Tune in for the next chapter:
"Grand Master Sarc, are there any herbal
treatments that can do any attitude adjusting?"

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Thank you to everyone for talking to me. It truly made me cry to see so many of you with the same experiences that I have. I feel a relief of pressure seeing that I am NOT alone. When I have felt alone for so long with this disease. My Dr did many blood tests today. 8 viles to be exact. She believes it to be in fact in my bones as I had feared. I have an MRI set up for next Friday. They are going to take a closer look at my chief complaints. And go from there. My Dr tried to referred me to a Holistic practice, and I was all excited to give it a try. I called my insurance right away and found that the option is not possible, since my insurance doesn't see that as a necessary or realistic option. She referred me to a Rumatoid Dr. now aswell, to hopefully get some answers through that. I find it quiet silly that there are specialist for Sarc but they only specialize in the seperate areas that the sarc effects in the body, rather than the sarc as a whole. That seems to me as if it would make much more sense. I brought my Mother to my appt today, and I think It was an eye opener for her, to hear from someone as a professional, and not just my relay of a conversation Me and a Dr had. She is very upset.. I feel for her. More than myself. I have cared for my mother my entire adult life, for all of her medical complications, and with some upcoming surgeries on her part, I really hope she doesn't think I wont take care of her. Even tho I hurt, my Children and my Mother are my primary focus. Being in the medical field myself, I take alot of pride in helping others. But for the first time in a very long time, I am in need of others help..
My Dr didn't want to prescribe me any Pain medication, and wants me to begin a higher level of Inflimation relieving therapy. Which Is all fine and dandy, but if the Tramadol isn't enough for me any more, and all the high doses of IBprofin and Naproxin I have been taking, I am really not too secure with the thought of another anti inflamitory medication to do the trick. I honestly just need some relief. If I am to continue this road in life, avoiding all of my favored activities with my children and husband, I think I deserve to be "pain free" occassionaly. Or atleast relieved of the "unbareble" part of the pain..
Another thing my Dr told me today, was that my Sarcoidosis is listed in a Stage lll catagory.. Isn't there only 4 stages? What the heck does that mean?? Any thoughts? She didn't seem to know how to explain it. Other than when It was discovered that the Granulomas have infiltrated my lungs, that was the deciding point of the severity.
Anyways, Thank you to all for keeping me informed, and helping me feel as if I am not alone, and helping me see that I am ok. No matter what happens. My babies need me to be ok.

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I found Valerian Root (whole herb) to be a better muscle relaxer than what the Dr prescribed. They took x-rays of my hands and it showed all 3 changes to the joints, rheumatoid, gout, and osteoarthritis. and on my right hand the bones had that see through look that I have seen on the x-rays of others. I tested neg for both gout and rheumatoid. So they thought it must mean its Sarc. Kinda makes sense I have it in my lungs, and all my lymph nodes (that was how I was dx)
Today for the first time in a week I am not sick to my stomach, but I took a meloxicam (Mobic) with lunch so I will see if that is the culprit or if indeed it is the Plaquenil. I also have shakes and weakness that comes and goes-and hot flashes. I hope it IS the meds cause those are much easier to fix. I contacted my Dr but haven't heard back from him. Of course he is out of town.

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Yankee,
you wrote: I have to find a Pain Clinic , but I know they won't help much.

I dont know why you feel this way. I have found that PM doctors are the best ones to see because pain is their specialty. I cant put into words how much my suffering has been relieved since recieving treatment from my PM doctor. I have read similar posts from other sarcoid patients on the forum. I hope you can find one that can help you. Keep your head up and think positively. Good luck.

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coonhound, I have been put on a new drug which has only made me have diarrea, and hateful. Cymbalta. I am already on mood stabilizers and I suspect they are working against each other????. I am going soon to the ruemy and ask her about all of this. It has almost been a month and I am sick every day.

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sarcoidiac, I understand why you are saying that. I am so racked with pain also, nothing helps. I also feel like I have nothing but pain ahead and worse pain. It is hard on one's brain it is. I don't even know how much more I can take. Mental pain is here, I go to a phychologist.... no help so far so maybe I am fighting too hard about meditation, ect.... I just can't get by it either.

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