Aa
possible fibromyalgia?
I have wondered often over the last few years if I have Fibromyalgia, but have never asked a doctor about it because I don't seem to have the tender points.
I'm wondering how many of these symptoms are "common" for fibromyalgia. Or maybe CFS?
-occasional severe sensitivity to noise. I can be sitting in a room, with people around me and noises I would normally not mind (kids playing, etc) will "hurt". I don't really have a headache, and it's not an actual pain. It's almost impossible to describe. It helps if I plug my ears. I can still hear everything, but not as acutely. This has never been me, and it's becoming more frequent now.
-along the same thing..sometimes a sudden noise (even in an already loud environment) will set off a vibration or buzz in my head, like I FEEL the sound instead of hearing it. Sometimes the vibration will travel through my whole body in a split second. When this happens, I go from feeling fine to feeling very "off" for hours.
-Random dizzy spells, usually followed by just a general "not well" feeling, sometimes nausea
-random shooting, very severe pains in my legs (occasional), or abdomen (more common). Recently they are so bad I can't stand up straight. They go away as fast as they came on.
-concentration problems. I struggle to follow someone's conversation. Even when I'm really trying. Sometimes I just have to ask them to repeat it because I really have no idea what they just said.
-foggy, "full" feeling in my head (behind my eyes), and can't mentally focus easily when that happens. It affects my eye sight too.
-I trip and fall often
-sometimes I stutter now. Or completely forget the word I need, when it's as simple as "water" or "dog".
-memory is failing me, a lot. Both long term & short term. Short term is really getting bad :/
-Fingers fall asleep if I'm lying down, no matter where my hands are.
-Pretty severe stiffness in the morning. Less severe, but exists, if I sit too long. It used to be so bad I couldn't walk when I got out of bed (4-5 years ago it felt like my feet/ankle bones were broken). It's gotten better (not sure why), but instead of just feet/ankles, it's a less severe, but more widespread, feeling of stiffness everywhere...fingers, toes, hips, elbows, back, etc. It will subside within an hour of being up in the morning, or within a few minutes of walking around (if getting up from extended sitting period).
-I wake up exhausted. Every morning. No matter when I went to bed. I usually tank around 2-3pm, even if I haven't done anything deserving of the sudden exhaustion. I tend to live on coffee now, because I can't afford to sleep all day. That worked for awhile, but lately, I honestly don't think it would matter if I didn't drink any..I think I would feel the exact same way.
-flu-like symptoms (minus nausea) 7-10 days prior to menstrual cycle, and 2-3 days into it. Body aches so bad I don't want to get out of bed, feeling hot to the touch, but no fever, more tired then normal, and just general "don't feel good".
-sudden dairy intolerance (within the last 6-9 months)
-growing inability to handle chaotic environments. i have 2 young boys (9 & 10), and their normal boy antics put me over the edge lately, and it makes me sad because they really aren't doing anything wrong. I don't get angry, just very overwhelmed & need everything to just stop for a minute so I can focus & think. It's like if there is noise, I can't hear my brain.
-heart palpitations/irregular heartbeat, sometimes food triggered, sometimes not (this started 2 years ago, doc ordered halter tests, etc, and said it was just my "normal", but it's getting worse) Sometimes it feels like my throat is closing, or an elephant is sitting on my chest. I almost always have a pressure type headache at this point.
I'm 38, BP is the high side of normal, only drink occasionally, no drugs (prescription or otherwise). I do smoke (which I know is not good) and am about 15-20 lbs overweight. I have been through some pretty severe stress this last year and a half, but many of these symptoms existed prior to that, in lesser degree. Life is actually pretty good right now, so I really don't think it's all anxiety. My daughter said that I haven't "felt good" for years now..and I guess she's right. I hardly ever get sick. But most days, I'm either aching, or exhausted, or walking around with this foggy feeling, or I say "I have a headache" because I don't know how to describe how I really feel. People are getting sick of hearing me say I'm tired..lol
I do plan to go to the doctor. I guess I am just looking to see if any of this sounds more familiar then not, while getting up the nerve to go explain all of this to a doctor I don't even like.
I'm wondering how many of these symptoms are "common" for fibromyalgia. Or maybe CFS?
-occasional severe sensitivity to noise. I can be sitting in a room, with people around me and noises I would normally not mind (kids playing, etc) will "hurt". I don't really have a headache, and it's not an actual pain. It's almost impossible to describe. It helps if I plug my ears. I can still hear everything, but not as acutely. This has never been me, and it's becoming more frequent now.
-along the same thing..sometimes a sudden noise (even in an already loud environment) will set off a vibration or buzz in my head, like I FEEL the sound instead of hearing it. Sometimes the vibration will travel through my whole body in a split second. When this happens, I go from feeling fine to feeling very "off" for hours.
-Random dizzy spells, usually followed by just a general "not well" feeling, sometimes nausea
-random shooting, very severe pains in my legs (occasional), or abdomen (more common). Recently they are so bad I can't stand up straight. They go away as fast as they came on.
-concentration problems. I struggle to follow someone's conversation. Even when I'm really trying. Sometimes I just have to ask them to repeat it because I really have no idea what they just said.
-foggy, "full" feeling in my head (behind my eyes), and can't mentally focus easily when that happens. It affects my eye sight too.
-I trip and fall often
-sometimes I stutter now. Or completely forget the word I need, when it's as simple as "water" or "dog".
-memory is failing me, a lot. Both long term & short term. Short term is really getting bad :/
-Fingers fall asleep if I'm lying down, no matter where my hands are.
-Pretty severe stiffness in the morning. Less severe, but exists, if I sit too long. It used to be so bad I couldn't walk when I got out of bed (4-5 years ago it felt like my feet/ankle bones were broken). It's gotten better (not sure why), but instead of just feet/ankles, it's a less severe, but more widespread, feeling of stiffness everywhere...fingers, toes, hips, elbows, back, etc. It will subside within an hour of being up in the morning, or within a few minutes of walking around (if getting up from extended sitting period).
-I wake up exhausted. Every morning. No matter when I went to bed. I usually tank around 2-3pm, even if I haven't done anything deserving of the sudden exhaustion. I tend to live on coffee now, because I can't afford to sleep all day. That worked for awhile, but lately, I honestly don't think it would matter if I didn't drink any..I think I would feel the exact same way.
-flu-like symptoms (minus nausea) 7-10 days prior to menstrual cycle, and 2-3 days into it. Body aches so bad I don't want to get out of bed, feeling hot to the touch, but no fever, more tired then normal, and just general "don't feel good".
-sudden dairy intolerance (within the last 6-9 months)
-growing inability to handle chaotic environments. i have 2 young boys (9 & 10), and their normal boy antics put me over the edge lately, and it makes me sad because they really aren't doing anything wrong. I don't get angry, just very overwhelmed & need everything to just stop for a minute so I can focus & think. It's like if there is noise, I can't hear my brain.
-heart palpitations/irregular heartbeat, sometimes food triggered, sometimes not (this started 2 years ago, doc ordered halter tests, etc, and said it was just my "normal", but it's getting worse) Sometimes it feels like my throat is closing, or an elephant is sitting on my chest. I almost always have a pressure type headache at this point.
I'm 38, BP is the high side of normal, only drink occasionally, no drugs (prescription or otherwise). I do smoke (which I know is not good) and am about 15-20 lbs overweight. I have been through some pretty severe stress this last year and a half, but many of these symptoms existed prior to that, in lesser degree. Life is actually pretty good right now, so I really don't think it's all anxiety. My daughter said that I haven't "felt good" for years now..and I guess she's right. I hardly ever get sick. But most days, I'm either aching, or exhausted, or walking around with this foggy feeling, or I say "I have a headache" because I don't know how to describe how I really feel. People are getting sick of hearing me say I'm tired..lol
I do plan to go to the doctor. I guess I am just looking to see if any of this sounds more familiar then not, while getting up the nerve to go explain all of this to a doctor I don't even like.
You did a really good job describing your symptoms so I think it would be a good idea to take a copy of your post with you when you go to the doctor. I was diagnosed with Chronic Fatigue/Fibromyalgia 20 years ago by a Rheumatologist, but I brought a couple books on the subject with me to discuss with him. Sometimes doctors need to be focused in on what your problem is and your post above might help. As far as the tender points go I have never noticed anything different about my tender points than any other part of my body. I have pain all over, and it shifts sometimes to my hands or feet, but basically I hurt everywhere. So don't get discouraged if you don't feel any tender points. I'm not even sure they still use that as the criteria. I have noticed that when doctors test my tender points they don't always know where to test anyway. If they ask if it hurts I just agree with them because basically I hurt everywhere. All of your symptoms sound familiar and you really should get a diagnosis so then you can work on feeling better. A few things to explore after you get a diagnosis would be your thyroid and endocrine system, and also explore online the role that viruses (even old ones that get reactivated in our body after stress such as Epstein Barr and Herpes virus. Dr Dantini in palm Beach Florida gets patients well with antiviral treatment. Also look at bacterial infections such as Mycoplasma and Clamidia. Roadback.org (not to be confused with ***********.org) is a website of patients recovering from different autoimmune illnesses through antibiotic therapy.
Hi Mousie 14,
Please consider to have your thyroid FUNCTION -not hormone levels in serum- as the conventional tests miss more times than not hypothyroidism.
You need to insist on Free T3, Free T4 and Reverse T3.
The Reverse T3 one is not usually covered by insurance, but Walk-in-Labs last time I checked had a $55 special .
The other thing to consider is the low vitamin D levels and your supplements.
Usually B12 levels are low when vitamin d is low and the problem with labs is that their reference ranges in N.America-I don't know where you live but I want to have this issue covered anyway- are too low in comparison to European and japanese standards.
So even if you may have been told your levels were fine, there's a chance that you may be suffering symptoms of low b12.
My suggestion is to do a trial of sublingual B12 Methylocobalamin (the neurological form of B12).
While you're at it-if you go ahead with this- is to also consider a trial of methylfolate, which is the neurological form of folate.
These 2 are deficient when methylation is low (hypomethylation) if you want to look it up. This can affect a person's health severely, as methylation has to do with a gazillion biochemical processes, including the ability to detoxify!
My last observation is that being deficient in vitamin D, means that your
supplementation may have to be in higher doses of D3, preferably in capsules or sublingual dropswith vitamin K2 (K2 drives the calcium metabolized by vit. D to the bones, teeth and joints instead of soft tissues!) and taken 3x daily with a meal containing some fat.
Have you ever have been on a gluten-free or elimination diet?
Gluten just keeps coming up as an "offensive substance" in many cases, with the ability to affect any part, system or organ in the body.
I hope this helps, however, please note that my comments are not intended to replace medical advice.
Best wishes,
Niko
Please consider to have your thyroid FUNCTION -not hormone levels in serum- as the conventional tests miss more times than not hypothyroidism.
You need to insist on Free T3, Free T4 and Reverse T3.
The Reverse T3 one is not usually covered by insurance, but Walk-in-Labs last time I checked had a $55 special .
The other thing to consider is the low vitamin D levels and your supplements.
Usually B12 levels are low when vitamin d is low and the problem with labs is that their reference ranges in N.America-I don't know where you live but I want to have this issue covered anyway- are too low in comparison to European and japanese standards.
So even if you may have been told your levels were fine, there's a chance that you may be suffering symptoms of low b12.
My suggestion is to do a trial of sublingual B12 Methylocobalamin (the neurological form of B12).
While you're at it-if you go ahead with this- is to also consider a trial of methylfolate, which is the neurological form of folate.
These 2 are deficient when methylation is low (hypomethylation) if you want to look it up. This can affect a person's health severely, as methylation has to do with a gazillion biochemical processes, including the ability to detoxify!
My last observation is that being deficient in vitamin D, means that your
supplementation may have to be in higher doses of D3, preferably in capsules or sublingual dropswith vitamin K2 (K2 drives the calcium metabolized by vit. D to the bones, teeth and joints instead of soft tissues!) and taken 3x daily with a meal containing some fat.
Have you ever have been on a gluten-free or elimination diet?
Gluten just keeps coming up as an "offensive substance" in many cases, with the ability to affect any part, system or organ in the body.
I hope this helps, however, please note that my comments are not intended to replace medical advice.
Best wishes,
Niko
Hi, I empathize and have about 80% of the same symptoms as you. Sorry you are struggling but Im relieved to hear that someone else has the same combination of symptoms because I feel like its just me and no-one around me really gets how I feel and/or is fed up with me having no energy to do much. Constant tiredness with the ability to sleep easily 12 hours and then need more within 4-5 hours of being awake; aches and pains all over especially after resting/sleeping; fingers unable to move especially in morning; stiffness in joints and muscles; headaches; feeling nauseous quite often; feeling vague and forgetful; vertigo at night with dizziness and sickness lasting for a couple of hours after getting up. I had blood tests already and its not thyroid or menopause. Low vitamin D which Ive been taking supplements for, tests for RA which showed slightly raised levels but these symptoms have really got worse in last 2 months. Going to see rheumatologist in 4 weeks so hope to find out what its all about. Will post again if anything comes up that makes sense of it all. Good luck and how your symptoms improve too!
Hmm, it sounds to me that you may have adrenal fatigue among some other imbalances.
Be prepared for a gazillion blood tests, imaging tests etc and a lot of running around the medical circuit before anything can be determined.
It is obvious from the details in your post that you have neurotrarnsmitter and hormone dysregulation, which may easily put you in an elite class of patients called Limbolanders.
I have come across hundreds of such individuals, who have
gone through all this for years, most of them still suffering and without real answers.
You need to see a doctor whose scope of work goes well beyond
the limits of conventional medicine.
Probably a very reputable and knowledgeable Functional Medicine Doctor.
Things you can look into:
1.Complete hormonal panel. Functional adrenal stress profile.
Checkout BioHealth labs website for details..
2. Neurotramsmitter assessment.
Please do a search under Holistic Primary Care- they have a huge website, so please take your time to explore any details they offer on neurotransmitters and hormones.
Some of the information could be life changing!
There's a lot more at play, however, you have enough material to
go through for now.
So please delay going to your doctor because chances are you will not benefit much.
The quality of your life depends on how you approach this matter.
Personally, I'm against doctors who make determinations in isolation - like going by labs and ignoring history and symptomology or taking a shot in the dark with psyche meds and antidepressants.
And then there are many doctors who follow conventional protocols too strictly, and disregard many conditions as non- "established" leaving their patients in Limbo, offering only symptom relief meds at best!
I hope this helps, however, my comments and suggestions are not intended as a replacement for medical advice.
Best wishes,
Niko
Be prepared for a gazillion blood tests, imaging tests etc and a lot of running around the medical circuit before anything can be determined.
It is obvious from the details in your post that you have neurotrarnsmitter and hormone dysregulation, which may easily put you in an elite class of patients called Limbolanders.
I have come across hundreds of such individuals, who have
gone through all this for years, most of them still suffering and without real answers.
You need to see a doctor whose scope of work goes well beyond
the limits of conventional medicine.
Probably a very reputable and knowledgeable Functional Medicine Doctor.
Things you can look into:
1.Complete hormonal panel. Functional adrenal stress profile.
Checkout BioHealth labs website for details..
2. Neurotramsmitter assessment.
Please do a search under Holistic Primary Care- they have a huge website, so please take your time to explore any details they offer on neurotransmitters and hormones.
Some of the information could be life changing!
There's a lot more at play, however, you have enough material to
go through for now.
So please delay going to your doctor because chances are you will not benefit much.
The quality of your life depends on how you approach this matter.
Personally, I'm against doctors who make determinations in isolation - like going by labs and ignoring history and symptomology or taking a shot in the dark with psyche meds and antidepressants.
And then there are many doctors who follow conventional protocols too strictly, and disregard many conditions as non- "established" leaving their patients in Limbo, offering only symptom relief meds at best!
I hope this helps, however, my comments and suggestions are not intended as a replacement for medical advice.
Best wishes,
Niko
Have an Answer?
You are reading content posted in the Fibromyalgia Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
