Somatic Symptom Disorder

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worrying about never getting an answer

hope i can find some advice on here!
any idea on what could be causing all this?

i started having symptoms in February 2023, my first symptom was Abdominal pain.
these are some of my current symptoms

abdominal pain (February 16) (achy,stabbing, sharp, cramps, /sometimes spasms)
temperatures/ fevers (99.0-102.1)
joint pain
heart palpitations when standing
dizziness
feeling extremely full after eating something small
nonexistent appetite at times
vomiting/nausea
upper stomach pain (achy/cramps)
abdominal pain getting worse after eating (about an hour after)
Upper stomach pain getting worse after eating (30-40 minutes)
(lower and middle)back pain (cramps and achy)
SOB when standing or sitting up too fast
lightheadedness when standing or sitting up too fast/ everything going black
stomach hurting/ feeling full after a sip of water
waking up with weak arms/legs
my hands feel like puffy and stiff when i wake up?
horrible Salt cravings (I can’t stop 😩)
Headaches upon waking up and last for a couple days
purple nail beds
Fingers curving in
Food feeling stuck in throat

i have been diagnosed with

(AMPS) Fibromyalgia
Joint hypermobility
Chronic pain
Chronic Nausea and Vomiting
Visceral hypersensitivity
Chronic gastritis
Abdominal Pain
Hypoglycemia
Vitamin D below Reference Range
Iron Deficiency Anemia
Elevated Blood-pressure Reading without Diagnosis of Hypertension
Excessive Weight Gain
Tachycardia

possible EDS as well
i don’t fully believe the IBS because i continuously get undiagnosed and then diagnosed with it/ my doctors don’t agree on anything.
i was also diagnosed with somatic symptom disorder but have been cleared from that.
my psychiatrist says they don’t believe it’s “my mind causing my symptoms” because our “minds are powerful but not to this point”

i have seen a GI doctor, rheumatologist, and awaiting to see an endocrinologist.
i have had fevers since i got sick, i believe my highest one was 105F (this happened while i was in a helicopter being transported)
i had abnormal labs back in March 2023 and some of them are still a little strange.
(i think these are all?)
lab work:
low WBC
low MCH
high RDW
low neutrophils
low lymphocytes
high CRP
mildly elevated ESR
mildly elevated Alanine Transferase
(barely) low Creatinine Serum
low Ferritin (has gone up now though)

i have had 4 CT scans (some doctor claimed he saw inflammation in my right side, however i have been told that is not true)
MRE
brain MRI
MRI to rule out arthritis
colonoscopy
Endoscopy
Ultrasounds
HIDA scan
i also have been tested for POTS but was told everything was normal and that i will grow out of it

8 reactions 8 comments
Post

looking for advice!

hope i can find some advice on here!
any idea on what could be causing all this?

i started having symptoms in February 2023, my first symptom was Abdominal pain. (These aren’t all my symptoms but most of the ones that affect me the worst)
these are some of my current symptoms
abdominal pain (February 16) (achy,stabbing, sharp, cramps, /sometimes spasms)
temperatures/ fevers (99.0-102.1)
joint pain
heart palpitations when standing
dizziness
feeling extremely full after eating something small
nonexistent appetite at times
vomiting/nausea
upper stomach pain (achy/cramps)
abdominal pain getting worse after eating (about an hour after)
Upper stomach pain getting worse after eating (30-40 minutes)
(lower and middle)back pain (cramps and achy)
SOB when standing or sitting up too fast
lightheadedness when standing or sitting up too fast/ everything going black
stomach hurting/ feeling full after a sip of water
waking up with weak arms/legs
my hands feel like puffy and stiff when i wake up?
Salt cravings
Headaches upon waking up and last for a couple days
lower back pain/ back pain
shaking (my arm shakes a lot randomly)

i have been diagnosed with joint hypermobility, Fibromyalgia, and IBS.
possible EDS as well
i don’t fully believe the IBS because i continuously get undiagnosed and then diagnosed with it/ my doctors don’t agree on anything.
i was also diagnosed with somatic symptom disorder but have been cleared from that.
my psychiatrist says they don’t believe it’s “my mind causing my symptoms” because our “minds are powerful but not to this point”

i have seen a GI doctor, rheumatologist, and awaiting to see an endocrinologist.
i have had fevers since i got sick, i believe my highest one was 105F (this happened while i was in a helicopter being transported)
i had abnormal labs back in March 2023 and some of them are still a little strange.
(i think these are all?)
lab work:
low WBC
low MCH
high RDW
low neutrophils
low lymphocytes
high CRP
mildly elevated ESR
low Ferritin (has gone up now though)

i have had 4 CT scans (some doctor claimed he saw inflammation in my right side, however i have been told that is not true)
MRE
brain MRI
colonoscopy
Endoscopy
Ultrasounds
HIDA scan
i also have been tested for POTS but was told everything was normal and i will grow out of it

i am starting to feel like maybe everything is just in my head and i won’t ever find an answer 😞

9 reactions 9 comments
Post

Looking for advice!

hope i can find some advice on here!
any idea on what could be causing all this?

i started having symptoms in February 2023, my first symptom was Abdominal pain. (These aren’t all my symptoms but most of the ones that affect me the worst)
these are some of my current symptoms
abdominal pain (February 16) (achy,stabbing, sharp, cramps, /sometimes spasms)
temperatures/ fevers (99.0-102.1)
joint pain
heart palpitations when standing
dizziness
feeling extremely full after eating something small
nonexistent appetite at times
vomiting/nausea
upper stomach pain (achy/cramps)
abdominal pain getting worse after eating (about an hour after)
Upper stomach pain getting worse after eating (30-40 minutes)
(lower and middle)back pain (cramps and achy)
SOB when standing or sitting up too fast
lightheadedness when standing or sitting up too fast/ everything going black
stomach hurting/ feeling full after a sip of water
waking up with weak arms/legs
my hands feel like puffy and stiff when i wake up?
Salt cravings
Headaches upon waking up and last for a couple days
lower back pain/ back pain
shaking (my arm shakes a lot randomly)

i have been diagnosed with joint hypermobility, Fibromyalgia, and IBS.
possible EDS as well
i don’t fully believe the IBS because i continuously get undiagnosed and then diagnosed with it/ my doctors don’t agree on anything.
i was also diagnosed with somatic symptom disorder but have been cleared from that.
my psychiatrist says they don’t believe it’s “my mind causing my symptoms” because our “minds are powerful but not to this point”

i have seen a GI doctor, rheumatologist, and awaiting to see an endocrinologist.
i have had fevers since i got sick, i believe my highest one was 105F (this happened while i was in a helicopter being transported)
i had abnormal labs back in March 2023 and some of them are still a little strange.
(i think these are all?)
lab work:
low WBC
low MCH
high RDW
low neutrophils
low lymphocytes
high CRP
mildly elevated ESR
low Ferritin (has gone up now though)

i have had 4 CT scans (some doctor claimed he saw inflammation in my right side, however i have been told that is not true)
MRE
brain MRI
colonoscopy
Endoscopy
Ultrasounds
HIDA scan
i also have been tested for POTS but was told everything was normal and i will grow out of it

i am starting to feel like maybe everything is just in my head and i won’t ever find an answer 😞

(edited)
17 reactions 24 comments
Post

Stop Stigmatizing and Minimizing Somatic Symptom Disorder

While I'm thankful the Chronic Illness community usually aspires towards ending mental illness stigma, we also tend to look down upon any potential diagnosis of Somatic Symptom Disorder.

Virtually any time I see this potential diagnosis raised I hear the individual say something along the lines of, "it's not in my head" or "my pain is real" or "I'm really sick".

First, I have a newsflash, ultimately your experience of pain IS in your head. We perceive and have cognitive awareness of our pain via the brain. So if pain being in your head means pain is not real, then no one's pain is real, irregardless of the circumstances.

If you are trying to say pain is not as real, or as valid if its origin is psychological, then thanks for stigmatizing mental illness, particularly Somatic Symptom Disorder.

We have a toxic relationship with physical pain and symptoms being tied to mental health in any way. I understand that much of this comes from the medical community.

While medical professionals often use diagnoses like Somatic Symptom Disorder to dismiss health concerns that doesn't mean we get to double down.

Somatic Symptom Disorder causes very real symptoms, it can be even more debilitating and take much more work to effectively treat than many other Chronic Illnesses.

Not only do people with Somatic Symptom Disorder experience physically manifested symptoms, often they are in immense emotional pain as well.

In addition they deal with the stigma, even from people in their own community frequently viewing their experience as not real, or valid. On top of all that often there is poorer access to mental healthcare.

ALL pain has a psychological component. Our experience of pain is largely qualified by the psychological and emotional suffering versus the actual physical sensation of pain.

Then there is the fact that the emotional pain and suffering of mental illness is just as valid and has at least the same capacity to be debilitating as any other type illness.

Honestly it's probably a good idea for all of us who deal with any type of chronic illness to seek out mental health treatment and at least be evaluated. We should be pushing against stigmatization of mental illness, not participating in it.

Instead if a health professional says they think your symptoms originate from psychological sources, let them know regardless of origin you are still in real pain. Let them know you're awar that similar to many diagnoses with a physical origin it is a diagnosis of exclusion, and you expect it to be treated like one.

Often we can only rule out a diagnosis to the extent we are willing to rule it in.

Acknowledge that all experiences of physical pain are at in part psychological, and state you are willing to investigate the psychological role of your pain, so long as they are willing to continue to investigate the physical role of your pain.

#MentalIllnessStigma #ChronicPain #ablelism #MentalHealth #SomaticSymptomDisorder #Undiagnosed #ChronicIllness

1 reaction 2 comments
Post

New diagnosis of #SomaticSymptomDisorder .

The testing psychologist said this instead of medical PTSD, but I disagree. If she had seen me having panic attack after panic attack over a trigger the other morning, she would have added the PTSD diagnosis (my therapists have both confirmed medical PTSD, but this was a battery of tests one therapist wanted me to have, and this is just one result).

Can the SSD community help me see that this isn't just a dismissive "oh, you think too much about medical things" kind of deal? I feel ... invalidated by not having the PTSD diagnosis, too.
#SomaticSymptomDisorder

Post

Health anxiety in a pandemic

It's not a good combination.
Normally, my health anxiety is very well under control, it may bother me once or twice a year and I know how to deal with it. But right now? I'm struggling, honestly. I've learned to not pay attention to small physical irregularities and to dismiss the anxious thoughts. I'll tell myself "well, you're not gonna die from this. It's a headache, not a brain tumor. If you're still having it in two weeks, then you may start to worry." In normal times, that works great.

But with Covid, well... Ignoring a sneeze or an itchy throat wouldn't necessarily be wise. But being alert of symptoms is super anxiety-inducing. And now my anxious thoughts are actually realistic and I should listen to it? It feels like I have to unlearn my coping skills. It's scary and confusing. And to complicate the whole thing, I have a special skill in weird psychosomatic issues. So there's also a decent chance that the symptoms are actually stress-related and aggravated by my anxiety.

But at the same time, acting upon these anxious thoughts is scary. I'm not at high risk at all, so I'm not too worried about getting ill myself (but of course I'm careful and wouldn't want to infect others), but I am TERRIFIED of quarantine. I live alone in a tiny studio apartment. And my depression is bad, so being locked in my house with no escape from my thoughts is an absolute nightmare scenario for me.

So I'm stuck in a weird spot of maybe having symptoms, not knowing if they're alarming or "just" psychosomatic, being too afraid to act upon them, and having more psychosomatic symptoms from all the anxiety. It's exhausting.
Am I alone in this?

#HealthAnxiety #Anxiety #Depression #COVID19 #CheckInWithMe #SomaticSymptomDisorder #SomaticSymptomandRelatedDisorders

1 comment
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Pet. #MightyPets

Hey everyone. I absolutely love my pets. I've got 3 ducks and 2 guinea pigs and they bring me so much joy. They are great listeners and are wonderful to snug with (although the ducks don't particularly enjoy hugs). I tend to go out and hold my pets when I've been dissociating a lot because I feel safe with them. Here is a picture of my guinea pig, Lucas, with a stuffed animal version my parents got me when I went to college (so I wouldn't be lonely). How do your pets help you? #Autism #MajorDepressiveDisorder #SocialAnxiety #ADHD #SeparationAnxietyDisorder #BorderlinePersonalityDisorder #GeneralizedAnxietyDisorder #Fibromyaliga #SomaticSymptomDisorder #Dysmenorrhea #AvoidantPersonalityDisorder

3 comments
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Hi I’m Kiya

I just wanted to introduce myself, as previously said I am Kiya (pronounced key-ya), Im only 14 but facing a lot. Here’s where the hashtags come I have #SomaticSymptomandRelatedDisorders I am #LGBTQ + and I have #Anxiety as well as #Dermatillomania and #Depression . There’s so many more but frankly I’m exhausted from (oh here’s more) #ChronicPain and #Fatigue I’m not diagnosed with any fatigue disorder. I’ve delt with so much in my life in the short time I’ve lived so far and I’m so thankful to have my #servicedogintraining to help, but right now he’s 5 months and is really overwhelming. I’m a really positive person, today I don’t feel positive, that is okay!!!! Not feeling emotions or not processing then is what is causing all of my symptoms (somatic symptom disorder) that’s what the doctors say. I don’t believe them though, I understand that I like everyone don’t process 100% of my emotions, but my whole life my mom has taught me that not feeling emotions won’t make them go away and that won’t help. The only problem is the the first doctors who really believe me are the somatic symptom clinic, and guess what, every time I try to say that I think there’s more I get asked by the psychiatrist “I think you may have illness anxiety” (thinking that you’re sick when you’re not) or “do you feel scared of touching serfaces or objects for fear of getting sick?” (Contamination OCD) as well ask almost outright saying we think that you’re lying and don’t believe you. All of those things basically say ‘you’re lying’. And so now I have fear of saying anything for fear of being called a hypochondriac. I’m sorry for this long and saddening post, I just feel horrible physically emotionally and mentally.

20 comments
Post

Hi I’m Kiya

I just wanted to introduce myself, as previously said I am Kiya (pronounced key-ya), Im only 14 but facing a lot. Here’s where the hashtags come I have #SomaticSymptomandRelatedDisorders I am #LGBTQ + and I have #Anxiety as well as #Dermatillomania and #Depression . There’s so many more but frankly I’m exhausted from (oh here’s more) #ChronicPain and #Fatigue I’m not diagnosed with any fatigue disorder. I’ve delt with so much in my life in the short time I’ve lived so far and I’m so thankful to have my #servicedogintraining to help, but right now he’s 5 months and is really overwhelming. I’m a really positive person, today I don’t feel positive, that is okay!!!! Not feeling emotions or not processing then is what is causing all of my symptoms (somatic symptom disorder) that’s what the doctors say. I don’t believe them though, I understand that I like everyone don’t process 100% of my emotions, but my whole life my mom has taught me that not feeling emotions won’t make them go away and that won’t help. The only problem is the the first doctors who really believe me are the somatic symptom clinic, and guess what, every time I try to say that I think there’s more I get asked by the psychiatrist “I think you may have illness anxiety” (thinking that you’re sick when you’re not) or “do you feel scared of touching serfaces or objects for fear of getting sick?” (Contamination OCD) as well ask almost outright saying we think that you’re lying and don’t believe you. All of those things basically say ‘you’re lying’. And so now I have fear of saying anything for fear of being called a hypochondriac. I’m sorry for this long and saddening post, I just feel horrible physically emotionally and mentally.