I can't get diagnosed. Extreme fatigue, left rib pain, muscle twitching and more
Posted , 8 users are following.
My first symptoms started in 2014, after losing a pregnancy at 10 weeks. It started with the pain and burning in my left breast (ultrasound excluded bc), and three months later a dull in my left rib with diarrhea (sorry TMI), after everything I would eat. Did CT (abdominal), lots of tests (celiac, full CBC, hormones-all clear). My symptoms persisted and although I became pregnant in March 2015 (had a successful pregnancy-during which symptoms were minimal), as soon as I delivered, the symptoms were back and worst this time. Severe depression, brain fog, pain under left rib, losing concentration, feeling hot (no fever), feeling severely exhausted, sudden chills... I thought it was hormones and possibly post partum depression but all the labs excluded this diagnosis. Had to move to Europe as hospital bills were piling, lost numerous jobs. In hope to find some thorough diagnosis I retested blood again, hormones, etc. after a bout of a FLU in January this year my blood revealed elevated ESR, fibrinogen, high Ige (limit 87, mine 540), whole body is itching, muscles twitching, burning in left side of chest with pain under left rib cage, sternum, left breast, nipple, all joints cracking with just movement. I feel like I am dying, I can't think straight, I am losing concentration and lacking words. I can't even function properly. I have Hashimoto thyroiditis for over 20 years. (I am 35 yrs old, 190 lbs, 5'9). I would just like to be myself again. chest x ray and Lung CT scan done in September 2016. I don't know where to go, sometimes I feel like this will never end. Depression is severe, and I have to inner drive, happiness. Prior to this I was a very happy, energetic and loving person. I appreciate any feedback and thank you for reading.
0 likes, 30 replies
dawn94288 ivana8116242
Posted
Hi Ivana, I'm so sorry that you are going through this and I know that it is unbeleivably hard. I cannot tell you how very miserable and discouraged I have been at times. But I think you know what that is like. And you are probably taking care of your little one too. Oh my! I suspect you can get much better.
Many or your symptoms sound like CFS/ME. I'm just not familiar with pain under ribs. Are you still having the tummy problems?
Hang in there.
ivana8116242 dawn94288
Posted
Hi Dawn!
Thank you for taking the time to reply. It's very difficult and unbearable. I am going to see an immunologist next week. I have the tummy troubles, yes. The pain under, around rib, sternum, but all on the left side.
I am so miserable that there are days I simply feel like giving up. I find myself curled up in bed, crying. I feel like my whole left side is inflamed and that there is like inside flame, when I take my fever, nothing.
Were you diagnosed and how?
Thank you again.
ivana8116242 dawn94288
Posted
You are extremely helpful and I am so thanful for your message! I think you are right on, with everything you wrote... unbelievable and yes my inflammation is very high. And I am actually able to feel it, as my ESR gets elevated.
Beverley_01 ivana8116242
Posted
Hi Ivana,
Are you in the UK? As there is a CFS/me service you can be referred to when you have symptoms but , no apparent cause. Not sure if because of the hashimoto's it would make a difference but, GP can refer you to the clinic. There is no clear diagnosis unlike other conditions. A specialist will say you have symptoms that are part of CFS/me but there is at present no biological test that can give a diagnosis. My friend who has this condition suffers very much with the chest and rib pain at times whereas I don't get this with my symptoms. Her onsetbwas triggered by a virus mine was a car crash. Not sure if the onset trigger affects the symptom presentation?
I hope you have support for you with the little one be it a partner, family or friends? I know you said you had had to move home. Having / feeling you have support is a big thing with this condition. It's easy to feel isolated when you're stuck with such debilitating symptoms.
Be as gentle with yourself as you can. These symptoms are not easy to live with and sometimes it's hard to see any light at the end of the tunnel. Look at any small improvements and see what you may have done differently to give you a focus for recovery. Rest when you can and do anything you can in small amounts of activity.
Has any of the doctors seen a link between your symptoms returning after your pregnancy? Could there be an hormonal imbalance?
Hope this helps
Beverley
ivana8116242 Beverley_01
Posted
Thank you for such a supportive message. Every message and info helps me hold on... I have my husbands family helping us. We are not in the U.K. I was a successful banker in the States, I had to leave my job, and move so I could continue tests, and hoping it was just a post partum depression. I had a lot of hormones done. I have seen 5 hematologists here (I thought perhaps I had a lymphoma), I had seen endocrinologists, cardiologists, etc. Because none of them have a clue they all say Hashimotos... but I have had this condition for so long, these pains, fatigue and such developed 4 years ago...
Beverley_01 ivana8116242
Posted
Hi Ivana,
I 'm glad so many people have responded to your post with such positive recognition of how you are with this condition. Feeling heard is a massive plus with this. I hope that you get to some conclusion with your symptoms.
I was glad to hear that your husbands family is supportive as that's a massive plus too!
When I came on the forum initially it was because I felt totally unheard. Family and friends didn't have a full picture of my struggle and I guess I needed other people with the same symptoms to validate how I was feeling. My trigger was a car crash. My friends trigger was a virus. We have mostly the same symptoms and it seems the trigger needs to put stress on our system in some way and the body goes into this , as you say in one of your replies, a zombie state. I like to remember that this is the body trying to protect itself.
The positive is that many people get better, this can take time which is the bit none of us want to hear. One of my other friends partners has CFS/me for 10 years. At one point he was bed bound. He has his own personal training business now and has been symptom free for about 10 years. I know of many others who have recovered too. Hope is important when things feel impossible.
Beverley
betty98863 ivana8116242
Posted
Hi Ivana,
So very sorry to your story, this CFS is a terrible thing and at the moment you don't even know if you have it, but knowing would be a blessing as it would give you the momentum to go forward.
I have had to give up work because of it and was making good progress and doing some voluntarywork en a blood test revealed my Vitamin b12 was very low, so am back to square one. I presume you have had your bloods checked as my folic acid was also low.
Please take Beverley's advice gentle with yourself, this was the best piece of advice I was given by Beverley when I first joined this forum it is baby steps and taking all thehelp you can get and not being afraid to ask for help, especailly with a baby,
tou
take care and please keep in touch
Betty
ivana8116242 betty98863
Posted
Dear Betty,
Your reply as well as the reply from both Dawn and Beverley are such a blessing and I feel like there is someone outside my mind that understands and feels me. I really appreciate it. The amount of symptoms are just so many that it's even such a mission to explain to the doctors, each time... it's a like preparing for a doctorates exam. I am blessed because I have such a loving husband that is beyond understanding and loving.
VitaminB12 is ok but I am lacking Folic Acid, and my ESR is elevated as well as my fibrinogen. I pray and pray and cry, I ask God every day to just help me get diagnosed. The nerve twitches are so bothersome, as well as other symptoms... especially the left side chest pain. I am thanful there are such nice and warm people on this forum. Thank you.
Beverley_01 betty98863
Posted
Thank you. It is sometimes so hard to be easy on ourselves and Being gentle is something that is in itself a baby step. It took me time to get the hang of it!
Hope things are going OK with you
Beverley
stephanie78397 ivana8116242
Posted
I might not be any help. I was recently diagnosed with chronic fatigue syndrome. I don't have half the symptoms that you do. But getting diagnosed with this is like hitting a brick wall. I had been having tests done for the past 10 yrs and nothing was ever found. So I feel like I'm not any closer to finding out what's wrong. I really wish you the best and I hope they do find something because being told you have an illness and there no cure or reason why sucks as much as trying to find out what's wrong and not getting an answer. Don't give up!
ivana8116242 stephanie78397
Posted
Thank you! Yeah I am not even sure that I have the same thing as you said, but I am just hoping to get some feedback and maybe some insight from the people that went through a maybe similar situation. What were your symptoms? 10 years is a long time!!!! I hope you too feel better and thank you from all my heart for the well wishes and support.
stephanie78397 ivana8116242
Posted
It amazes me with how progressed we are these doctors still can't figure things out! I'm just tired 24/7 no matter how much sleep I get. Jus dont feel well, not necessarily "sick". Beyond tired to where I can't even see straight. Very hard to explain. Are you married? Or have a supporting family while you're going through this?
ivana8116242 stephanie78397
Posted
Yes! You are 100% right. Have you checked all your thyroid, hormones, ANA, lyme? I excluded all of those, that's why I am so frustrated! I am married, have a 16 month old baby. I cry and despair because I feel this state of being is keeping me away from being a good mommy to my son and completing simple chores. Is your fatigue related to any period of the day or is it all the time?
stephanie78397 ivana8116242
Posted
Yes I've had it all tested. Even did a sleep study and mlst. Mine comes and goes. I can wake up feeling horrible then a few hrs later feel "normal" for an hr then back to feeling crappy. Lol makes you think you're crazy or something. Have you tried specialists?
ivana8116242 stephanie78397
Posted
Did a head MRI in September 2016, Chest Xray, chest CT, ultrasounds, bloodworms, over 20 specialist in 9 months... where do I go from here?! Let me tell you we do share same symptom of fatigue... same exact thing and same way. It's like it comes in waves. I wonder if there is something we all have in common...? Like a medicine we took, or I don't know...
stephanie78397 ivana8116242
Posted
Oh my, so you've been everywhere!!!!! There has to be a common link somewhere. I've read so many story's from other people and it is all generally the same thing with the fatigue. I wonder if we have something wrong with our brains? Not saying that as a joke but maybe something has gone wrong in there or we are missing something that the drs aren't looking at?
ivana8116242 stephanie78397
Posted
Agreed, it's either brain or some sort of bacteria or infection that none knows the cause to. I have developed severe Health anxiety throughout this process but the worst part is it gets worse... I had a head MRI and neurologist look at report, CD. All they found is some cervical issues at my C6, C7 but assured me that wouldn't cause these issues. Have you had scans?
stephanie78397 ivana8116242
Posted
I asked my Dr if I could. He says if I want to wait till I get some of my bills paid off he could send me. I got screwed when I had my sleep study. They really didn't find anything but mild sleep apnea and was gonna do a trial on a cpap. Well the trial turned into me paying 2000.00 for the machine and my sleep apnea was gone after the first use. It doesn't help my fatigue at all. I guess these drs need our money more than we do : (. So nothing was found? No wonder you have anxiety. Nobody is helping you...I'm so sorry
ivana8116242 stephanie78397
Posted
Don't get me started on the doctors and money... I will tell you though that the doctors in the US are way better. I am seriously considering contacting the Mayo Clinic and seeing if they could help in any way. I contacted a very good diagnostic hospital in Germany, they are fully booked until November 2017. Thank you Stephanie for your understanding and support. I wish you feel better. In the meantime one thing I do promise is if I ever find out, I will report back.
stephanie78397 ivana8116242
Posted
betty98863 ivana8116242
Posted
hi ivana
hope today is a good day for you and yiu can enjoy your little son.
What is happening to us with CFS is real, it is not in our heads, we are not imagining it, it's not all in the mind, this I know, some doctors think it is, but we know all too well it is very,mptoswyvery real. so make a list of all your symptoms, all your tests and take that with you to the doctor, change doctor if necessary, as a good doctor is very important, we all need a good doctor.
There is a lot of help to be found on this forum as well as comfort and fun, yes we do try aand have fun.
I have the dreaded brain fog today, hate it, but I refuse to let it get me, I believe that one day soon I will start to feel wbetter and like you I ask God to help me, please try and remain positive, I break each day into the morning, afternoon and evening, as I do not like facing a whole day, it seems so long.
stay in touch, look forward to the day when all our ills will be gone!!!!!!
love and hugs
Betty
ivana8116242 betty98863
Posted
Thank you. Your message made me feel great. This world does have some amazing people. Brain fog is a dreadful symptom and makes us feel like zombies, and as if we lost our concentration and as if all the thoughts and reason have been pushed somewhere within... awful.
I try to remain positive as much as I can. I pray I find and answer and I pray I live the day where I can just for a moment be well enough to be at least 95% my old self and take care of my only son... hugs!
Ivana