January 2011: So when my right thigh felt a little numb, I attributed it to the long walk in the snow I did the night before. “Must have a muscle spasm” I thought. When the next day I got numbness in my face (twitching of the muscle between my jaw and eyes with a knot/hard ball on the jaw), yes, momentary panic, and then, “I have a really big knot in my back, leading to my neck. That must be it.” When the symptoms continued overnight and I awoke with my entire right side feeling tingly, I freaked and went to the emergency room. Autoimmune disorders run in my family. I have a cousin with MS and to be honest, it is my biggest fear.
After 4 hours at the hospital, and only an EKG, blood pressure and urine test, I’m not sure I’m in the clear yet. The doctor had me perform some tests for strength, and my numb side is not weaker than my non-numb side. She called a neurologist who doesn’t seem concerned. However, I am still terrified I have MS or some other neurological disorder. I go for an MRI in 2 weeks. I am going to pray the symptoms go away and never come back again and that the MRI comes up clean. I don’t have vision problems or cognitive impairment. No slurred speech or trouble talking. I am just hoping and praying with all my might that this is nothing and I can try and have a baby this year (without worrying about being in a wheelchair soon).
It’s been 2.5 hours since I left the hospital and the decrease in worrying has also resulted in a decrease in symptoms. I think once I started thinking about the worst case scenario, the stress aggravated my symptoms. I’m feeling quite a lot better and I only mildly notice the symptoms right now. Hopefully just a twisted back or pinched nerve, or something (non-life threatening). I do know tingling is associated with panic attacks. I think I probably did have a panic attack once I started thinking it could be MS.
I went the the pharmacist and asked him what I could take for migraines and he picked out sublingual b12 vitamins.
Updated Feb 5, 2011
Well, after a month of varying points of numbness and yo-yo-ing stress: my leg went completely numb after shoveling the driveway – panic. I got numbness in my shoulder – panic. I have felt facial, stomach and neck numbness – panic. However, I never had muscle weakness (although my leg did tire easily). The numbness was not constant either – clear signs it wasn’t likely MS. Looks like it’s just sciatica and back misalignment. Chiropractor is helping my leg and the other symptoms seem to be related to my poor posture on the computer – namely neck and shoulder problems from sitting at a desk that’s too high (shoulder issues from mousing too high) and from my head being craned down to look at my laptop screen (facial numbness). MRI is on March 7th, but I’m feeling confident that it will come back clean. I do have a history of back sensitivity. *sigh of relief *
Updated Feb 6, 2011
Okay, so when I woke up this morning and had numbness in my stomach and throat, the sciatica/back problem diagnosis wasn’t sitting well with me. I was symptomatic (numb and tingly) all morning. My heart started racing around noon, and because I know my TSH levels are normal right now, I took one of the beta blockers I have from my early Graves disease diagnosis. Amazingly, my symptoms went away. I googled beta blockers and numbness and stumbled across hemiplegic migraines. It seems to fit. Only an MRI will tell for sure, but I feel pretty good on the beta blockers for now. It is strange that I have been having these for a month and they seem to get worse – it could be the stress of it all being undiagnosed and having “MS” as a possible cause.
I don’t have severe headaches (but mild ones, mostly in the temples), neck stiffness, some visual disturbance (not drastic, mostly photosensitivity, (including wavy peripheral vision), and a racing heart. I also noticed more prominent veins in my chest and legs/upper thigh area. I am also going to the chiropractor and for a massage, although the deep tissue massage I had last week seemed to hurt more than help. Wish me luck!
Updated Feb 8, 2011
This page seems to sound most familiar to my situation. I can relate to the “I’m dying” sentiment. I fluctuate between feeling fine one minute and convinced I’m dying the next. And I do think that the stress of the symptoms and a lack of a diagnosis has only increased the severity and frequency of the attacks. It seems almost constant right now. So annoying. I also just discovered that thyroid disorders and migraines are co-morbid!
Updated Feb 19, 2011
Latest Theory: my TSH has been as high as 2.9 recently. I had read that anything over 2.0 could cause some hypothyroid symptoms. I’m thinking that maybe I was hypocalcemic or had some parathyroid issues (there’s some connection to hypothyroidism and vitamin K insufficiency). This would explain the knots/muscle spasms:
- I have them on my hip joint –> sciatica and thigh numbness and tingling;
- shoulder joint –> arm heaviness and mild carpal tunnel symptoms;
- my neck and shoulders –> headaches, migraines and photophobia, tinnitus
- feet –> very tender in the morning
- sleeping –> completely unable to nap. Wake up many times a night and early in the morning, and can’t fall asleep again.
- diarrhea and mild incontinence: I feel sudden urges to pee and a little comes out (but I don’t fully wet myself)
- Bright, blue, tender, swollen veins throughout body, especially noticeable in my chest, thighs, hands and feet.
In the months-and-a-half of living with these symptoms, I have not had one blood test done (been to the doctor 5 times). I’ve also had chronic diarrhea, which also fits.
Also, missed my period this week, so I may not get that MRI. Fingers crossed all my sleuthing produced the correct diagnosis.
Updated Feb 24, 2011
Okay, so the latest is…FIBROMYALGIA! Oh, I’m a lucky lady. What are the chances of getting Graves and Fibromyalgia one-year-and-a-half apart?! The bad news – life long disease that comes and goes. The good news – it’s not fatal or progressive. I’m pretty sure my mom has had it (undiagnosed) for years. The biggest problem is the sleep deprivation. I do not sleep well right now. I’ve had diarrhea every day since January. I haven’t been in severe pain yet. I’m still functioning. My Graves is controlled.
I’m going to have to live with this and the first step is coming to terms with it. Yes, my mom has had bad bouts with sciatica, dry mouth, restless legs and diarrhea. However, she has not been completely debilitated by it. Her worst symptoms is “no sleep” and “sleep apnea”. She’s exhausted these days in the morning, but can usually get going later. She doesn’t feel like getting officially diagnosed because she’s been made to feel like she’s crazy over the years and that her symptoms will just get dismissed. For me, at least my diagnosis will help her understand what’s wrong with her and hopefully find something to help her sleep!
My friend’s brother-in-law thought he had bizarre complications from sciatica, including photophobia, migraines, muscle and joint pain, dizziness, blue veins, etc… He was also never diagnosed with fibromyalgia. He went 3 years of horrible pain and suffering and was ready to retire early and go on disability. What saved him was he started going to physiotherapy. This helped his symptoms a lot. Then he started working out and his symptoms really became invisible. He considers himself cured. I think that it makes intuitive sense to me and I will start working out again. I’ve always been healthy and active, so maybe that’s why my symptoms aren’t too bad. It’s good incentive to keep in shape, that’s for sure!
Updated March 12, 2011
Okay, so I’m noticing some mild swelling in my hands and feet. I am now prone to think that I might have some form of spondylitis (perhaps undifferentiated spondylitis). I know, what I crazy journey. Same symptoms, but they feel more tingly now and more like circulation problems at my hip and shoulder joint is compromised due to swelling.
Undifferentiated Spondyloarthropathy (USpA) is a term used to describe symptoms and signs of spondylitis in someone who does not meet the criteria for a definitive diagnosis of AS or related disease. Main symptom: Enethesitis - inflammation where a tendon or ligament attaches to the bone.
Update: April 9, 2011
Still waiting to see the neurologist. Right now my veins are big and blue and tender. I sometimes get pins and needles in my thighs or other areas in my body (mostly my thighs). I thought it might be undifferentiated connective tissue disease (UCTD), but I remember my doctor saying that it’s usually accompanied by joint pain, which I don’t have. So, I’m back to thinking some version of fibromyalgia? I have no effing idea, as is abundantly clear by this blog. I promise to update after I speak to an expert. I had a panic attack this week with the tingly thighs, thinking it was something more serious again, but I think I need to keep myself as stress-free as possible to prevent any future flare-ups.
Latest hypothesis: vasculitis. It accounts for the veins, really, all of my symptoms, although I can’t figure out what kind of vasculitis it could be…
Update: April 17, 2011
I went to the doctor this week and they were able to rule out Lupus. It looks like there is increased inflammation in my body. I had higher than normal amounts of C-reactive protein (CRP) in my blood, and a high CRP level suggests inflammation.
Today my symptoms are relatively mild, and I wonder if pregnancy is to thank for that. I told the doctor that if they had given that blood test to me in January that I guarantee that the results would have been much, much higher. As it stands, it would be best for me to see a rheumatologist when I’m having a flare up. The only problem is that you have to book these appointments months in advance, so timing that appropriately seems impossible. If I had had that MRI in early March they might have been able to detect it then, but I didn’t think it was worth risking the pregnancy (I am currently 12.5 weeks).
My symptoms best fit with the Polymyalgia Rheumatica form of vasuliltis, which affects arteries near the joints, or Giant-cell arteritis (GCA or temporal arteritis) which is an inflammatory disease of blood vessels most commonly involving large and medium arteries of the head. Neither fits exactly – mine seems like it affects the thighs, hips, shoulders, and neck/face were primarily affected. Also, these conditions are rare in people under 50.
My mother has had similar symptoms for the last 25 years that come and go with stress. The most recent really bad episode had her suffering from debilitating sciatica pain for 2.5 months. She’s never been officially diagnosed with anything because, like me, her symptoms don’t fit any typical diagnosis. So, we suffer on. I suppose I might have to expect to live with this for the rest of my life, however, given the multitude of more deadly options they tested me for, I suppose that I can carry on and be grateful it isn’t anything more serious.
Updated May 3, 2011
Going to the Rheumatologist & Neurologist today. So excited to get some answers. Will update asap.
And the verdict is in: the rheumatologist was confident it was muscular rheumatism - aka, Fibromyalgia. The neurologist had no clue (duh) and wants to do an MRI after I give birth. Thank god I saw both because the Rheumatologist explained the history of fibromyalgia, the physiology of it. He didn’t think it was a “catch all” diagnosis, but a real condition. Thank you for understanding and making me feel like I wasn’t dying or crazy (which the neurologist did, although in a nice, concerned way). He also said because I haven’t had it very long there was a slim possibility it may go away. Otherwise, it won’t affect my lifespan. Yay? He also mentioned that many people have this condition in varying degrees. He compared it to turning the volume up on our senses. It’s related to the brain stem and a neck injury could ignite it. Also, it’s often accompanied by hard muscles, swelling, diarrhea, sleep disturbances (and fatigue), numbness & tingling, and in mine and my mom’s case, big blue veins. For example, my daughter’s babysitter get’s a numb, tingly thigh around the time of her period. Stress and hormones can play a role.
Updated June 13, 2011
Wrong! I started noticing swelling in my arms in legs, even the one side of my face. After doing more research and talking with my mom, and actually her sister, too, I discovered that we may all have Alkylosing Spondilitis!
- Flare ups are triggered by kinking our necks or bad posture.
- Blue veins are due to swelling from enthesitis – inflammation of the connective tissues (tendons and ligaments).
- This disease is often mistaken for depression, anxiety, fibromyalgia and arthritis.
- Often by the time it’s diagnosed, it’s in ederly people who’s had it for 20 years. They will have spine deformaties and disc degeneration.
I’ll write more later, but I see tons of questions online about the sudden appearance of blue veins, as well as unexplained swelling. This may be it! I’ve had a tight back for years, but nothing to alert me that it was just a mechanical difference that made me so tight and inflexibile.
Updated June 29, 2011
Unbelievable, but I now think I have officially sovled the mystery of the big, blue veins- and the numbness, tingling, fatigue, eye problems - Anemia! I got a call from my doctor yesterday telling me that the results of my last blood test showed that I am:
- Calcium deficient 2.08(2.15-2.60)
- PTH 1.2 pMOL/L (1.3-8.2)
- Low Magnesium 0.69 MMOL/L (0.65-1.05)
- B12 deficient: 115 PMOL/L (>133)
- Anemic (low iron),
- low hemoglobin 117 G/L (115-165)
- hematocrit 0.38 L/L (0.37-0.47) &gftr
- RBC count 3.7 (3,8-5.8)
- Low Ferritin: 10 (11-145)
- Low Albumin 36.0 G/l (35-50)
- Very Low Creatine: 46 UMOL/L (60-115)
- High ESR (inflammation): 34 MM/H (0-12)
- High hs-CRP (indicates inflammatory condition): 5.0 (1-3)
From what I’ve read, some people get big, blue veins when they’re anemic (not sure if it’s related to B12 specifically, because not all anemics have this). It is also related to swelling. I have swelling in my arms, face, legs, stomach, back, ankles… Apparently, when blood levels are low in protein (hemoglobin?), some process of osmosis draws fluids from your muscles – resulting in swelling, or edema. My upper arms felt heavy, watery, jiggly. I don’t know how I could have these symptoms for 6 months, and be 5 months pregnant and not have this diagnosed sooner. I had read all about I didn’t bring it up to the doctor because this seemed like a first line of defence answer – simple blood test could have ruled it out months ago. They tested for lupus but not this?!
I wonder if the hypocalcemia is related to my thyroid. I hear there’s a connection. (Hypothyroidism can result in lower stomach acid, which would impair the absorption of vitamins and minerals)
- Hypocalcemia is a low level of calcium in the blood. It can occur from taking medications, such as diuretics; medical treatments; or disease processes, such as renal failure or hypoparathyroidism.
B12 Deficiency / Pernicious Anemia
My symptoms included (see my B12 blog here):
- Fatigue, low blood pressure, rapid heart rate (often at rest), pallor (I’m normally pale, so hard to tell), muscle weakness (tired going up and down stairs, especially, and blow drying my hair) and shortness of breath, known as ‘the sighs’ (I noticed this after mild exertion)
- Mild cognitive impairment, including difficulty concentrating and sluggish responses, colloquially referred to as brain fog
- Neuropathic pain
- Frequent diarrhea (January and February, but subsided)
- Paresthesias, such as pins and needles sensations or numbness in fingers or toes, due to B12 deficiency affecting nerve function (only noticed in upper arms and thighs)
- Wikipedia said it may present with hyperthyroidism or hypothyroidism (I am hyper-)
Anemia (Low Iron)
- I got resltess leg syndrome (RLS), on top of being very tired. I got RLS with my other pregnancies too, which is interesting.
- Less common symptoms may include swelling of the legs or arms, chronic heartburn, vague bruises, vomiting, increased sweating, and blood in stool. I did have face, arm and leg swelling, intermittent heartburn, vague bruises, occasional night sweats, but there was no vomiting, and no blood in stool.
- In severe anemia, there may be signs of a hyperdynamic circulation: tachycardia (a fast heart rate), bounding pulse, flow murmurs, and cardiac ventricular hypertrophy (enlargement). There may be signs of heart failure. I don’t know about heart failure, but I did have tachycardia.
Albumin, the body’s predominant serum-binding protein. Hypoalbuminemia can result from decreased albumin production, defective synthesis because of hepatocyte damage, deficient intake of amino acids, increased losses of albumin via GI or renal processes, and, most commonly, acute or chronic inflammation. The end results can be swelling/edema.
Acute and chronic inflammation: Albumin levels that are low because of acute inflammation should normalize within weeks of resolution of the inflammation. The cytokines (TNF, IL-6) released as part of the inflammatory response to physiologic stress (infection, surgery, trauma) can decrease serum albumin by the following mechanisms:
- Increased vascular permeability (allowing albumin to diffuse into the extravascular space)
- Increased degradation
- Decreased synthesis (among other mechanisms, by activating TNF-a, which decreases transcription of the albumin gene)
In patients who are critically ill, low calcium levels can be simply due to hypoalbuminemia, which has no clinical significance because the active fraction (ionized) is not affected. However, to prevent missing a second hypocalcemic disorder, measure the ionized calcium level whenever the albumin level is low. The significance of hypoalbuminemia appears to be its reflection of the severity of the underlying disease process.
What do I think is going on with me? Something along the lines of…
Chronic pain arises due to dysfunctional response of the body’s own central nervous system to musculoskeletal degeneration (weakness secondary to aging) or injury. Pain stimuli arise as a result of tissue damage and inflammation. The nerves carry these painful stimuli to the brain, which responds by releasing inhibitory substances to decrease the pain. Neurogenic inflammation (inflammation created by nerves) is continuing inflammation in the musculoskeletal system generated by nerve impulses and the release of inflammatory substances at the site of the original injury with more inflammation and pain resulting. Prolonged inflammation and pain lead to protective muscle spasm, consequent accumulation of fibrous tissue and muscle shortening. The fibrous tissue form palpable taut muscle bands and trigger points. Such muscle dysfunction and spasm lead to compression of blood vessels, and decreased blood flow, which also has been implicated in pain stimulation, and decreased joint mobility. Nerve root compression by shortened paravertebral muscles disrupts nerve blood supply, causes nerve dysfunction, and leads to neurogenic inflammation.
Basically, I think I triggered some autoimmune inflammation that doesn’t seem to fit anything other than polymyalgia rheumatica, and given my age, 33, I’d be like the youngest person ever to have had it! The rest of the symptoms (swelling, vitamin deficiencies, etc.) seem to be a symptom, not a cause of my issues. I still have pain, aching and fatigue, primarily in my shoulders/upper arms, and hips, with pain points and swelling in my back, neck and jaw.
The scariest symptom that I experience is, occasionally, I get spells of severe light-headedness, rapid and faint pulse, and this morning, I even puked and felt like I was going to pass out. Inflammation of the heart? Hope not!
Also, I’m not sure if it’s because of the vitamin deficiencies, but I’ve been eating a lot. I think I feel the need to replenish my body of the nutrients it’s losing. But this week I’ve ate more than usual and seem to be hungry every 2 hours or so. My thyroid levels are normal, so I think it has to do with something else.
For those of you who are reading this for thyroid reasons, hypothyroidism can cause a lot of these same issues. I just wish that my problem was as easy to treat. I little synthroid and you should be good to go!
Updated July 13
I’ve been taking vitamins (Calcium, Iron, Magnesium, pre-natals, B12 (injection) and vitamin D) for 3 weeks now and while I’ve noticed some reduction in pain, tonight I am all pins and needles: in my leg, my back, my arm and face (mostly my left side, ironically, since it all started on my right side). Since I’ve been religiously taking my vitamins, I wonder if I’m either not taking enough or something else is going on here. Weird! Fortunately, not in pain though. Another blood test tomorrow will let me know.
- Calcium: 2.15 up from 2.08 (2.15-2.60)
- B12: 215 up from 115 PMOL/L after B12 injection (>133)
- Anemic (low iron),
- hemoglobin: 113 down from 117 G/L (115-165)
- hematocrit: 0.33 down from 0.38 L/L (0.37-0.47) &
- RBC count: 3.46 down from 3.7 (3,8-5.8)
- Ferritin: 13 up from 10 (11-145 UG/L)
- MCH: 32.6 up from 31.6 (27-32) (macrocytic)
- Low Albumin 34 down from 36.0 G/l (35-50)
- Low Creatine: 52 up from 46 UMOL/L (60-115)
- High ESR (inflammation): 20 down from 34 MM/H (0-12)
So my anemia is getting worse despite increased iron and protein in my diet. What should I be worried about here?
Updated July 18
Saturday I had a very busy day with my daughter. We were on the go from 8:00 am to bedtime. I felt great and was so impressed I made it to the end of the day with energy. However, Sunday was a different story. I spent almost the entire day on the couch feeling extremely weak and lightheaded. It’s like my body needed the entire day to recover. I felt horrible and it scared me again. It’s Monday now and I feel “ok”. So is that the anemia? Am I not producing enough blood cells? Not eating enough protein (I ate a lot yesterday hoping it might help)? What is wrong with me?!
Updated July 20
I did a little reading yesterday and I think it helped understand why I’m not feeling great yet. I read that my B12 results are still really low, even after my first B12 shot. I was 115 and extremely symptomatic and sore. Now, after the shot, at 215, I am still really low. My body doesn’t have a) high enough levels, or b) time to heal after the damage yet. So the fact that I’m still achy and weak makes sense, especially since I’m still VERY anemic!
I had read that very low B12 levels could raise my ESR because of the nerve damage in my body. Since my ESR is down to 20 from 34 hopefully means that I’m on my way to recovery. Also, I read the low B12 could lead to vitamin D deficiency, which could have caused my low calcium levels. I am hoping this is the cause of all my troubles. It makes sense kind of, when you think I was pregnant twice last year and lost a lot of blood in October after losing the second pregnancy. This could have contributed to my low B12 levels. I was on folic acid, which maybe surpressed my symptoms until January when I started with the peripheral neurpathy (originally in my right thigh and right cheek/jaw, with muscle tightness in back , my neck and left trapezius). Muscle spasms can occur around areas of inflammation in order to protect it. I also had many migraines in January and early February – a symptom of B12 deficiency. I asked the pharmacist for something to help with migraines and he gave me b12! That and my prenatals probably saved me from being even worse off! I got pregnant during this time! I also had mild tinnitus, actually starting before the numbness, back in December. Also, the problems sleeping, I had noticed this started last summer and fall, and then in January it was worse than ever.
By March I had numbness and aching on both sides of my body and it included my upper arms, near the shoulders. It was so bad I felt like I had no circulation in my upper arms (inflammation and muscle spasm?). But it didn’t seem to affect my hands and lower arms. My hips also constantly ached during this time. It also hurt when someone would sit on my lap. I got thigh tingling frequently.
Three trips to an ultrasound clinic showed that the baby looked perfectly normal. I wept with relief and joy at this news.
In May I noticed swelling. I guess the very low B12 and severe anemia caused this, but it seemed to be around my painful areas – upper arms, back, face, hips and thighs. Maybe the nerve inflammation caused swelling? Not too sure about the swelling except that I had very low albumin levels, which would cause edema! Note, a rheumatologist diagnosed me with fibromyalgia at this time – diagnosis based on bending over and asking questions – no lab work! A neurologist had no idea, but wanted to do an MRI. Since he didn’t think it was life threatening, we decided to wait until after the baby was born in October to do one since I didn’t seem like I was dying immediately. No blood-work done by either.
By June my hips and upper arms were in constant agony and I started having calf cramps at night time. I’m guessing this is when the Calcium deficiency started to really kick in. One more trip to the doctor, for my daughter, and I broke down crying. During this time she ran a few tests, ruled out rheumatoid arthritis, and lupus, and thought the rest of my symptoms were me being anxious. She kept telling me I was being anxious! When I told her I’d have severe heart palpitations at rest, she said it was anxiety. She told me my family was worried that I was worrying so much! When she finally got the results back from my final blood test (6 months after my symptoms started), and it showed all of the things I was low in, she felt bad. She said serveral times that she didn’t think I was crazy – clearly this is what she thought before! I was even starting to think that I was crazy or dying of some rare disease.
Also, some of my weirder symptoms were:
- My feet are always tender in the morning and it takes a while for them to feel normal
- my symptoms are worse at rest. The second I stop moving, everything seizes up. Night time is the worst. Tingling, restless legs, crawling sensations down my arms and legs. Fatigue. Heart palpitations.
- I got floaters in my vision, as well as very bloodshot looking eyes.
- Diarrhea that came and went in bouts (of weeks or months)
- Mild incontinence
- L’hermitte’s sign: an electrical zap feeling, like you’ve been electricuted
After 3 weeks of supplementation and a b12 shot, I’m still very low in everything and not feeling great yet, but the constant burning pain in my upper arms and hips has died down greatly. I feel it mostly at rest now and am very stiff after sitting. My thighs are still really weak and I have trouble climbing stairs or walking too much, but I definitely feel better than I did! I think all of my symptoms were precipitated by B12 deficiency. Who knew that it could wreak such havoc or be so hard to diagnose! They tested my reflexes in January and February and said everything was normal! What a hellish half-year. Hopefully I’m on the mend and will have a healthy baby and delivery. Wish me well!
Updated July 26
Three weeks ago my B12 level as 115. I’ve had a shot a week for the past three weeks. The day and night of the shot I actually feel worse. Not sure what it is that makes me feel that way, but I’m achy and tired and extra tingly. However, a couple of days later I feel much better. I’m still taking oral B12 as well. I want my B12 levels sky-high when I deliver.
My mom has pernicious anemia as well, and has spent her whole life with borderline B12 levels, so that some days/weeks/months she’s symptomatic, while others she’s fine. She wanted her B12 levels tested again so that she could start getting the shot. She came off her B12 supplements for 3 days and was an unrecognizable person – emotional, stuttering, shaky. I am praying her levels were really low so she can finally get some proper care for her condition.
When I got sick, I thought my symptoms were similar to my mom’s, and just prayed that if I ever got “fixed” that I could help my mom figure out what was wrong with her so that she could get treated as well. Doctors always tell her there’s nothing wrong with her when she complains of bizarre symptoms, like Lhermitte’s sign (electrical zap), thigh tingling, insomnia, arm numbness. She was tested in April of this year (which I didn’t know), and her level was 370, but she’s on supplements. Doctor thinks that level is perfectly fine. After reading about B12 deficiency, and just knowing what my mom has gone through her entire life, we’re both convinced that she’s low and will keep her on oral supplements for the rest of her life. It would be nice for the doctor to stop calling her anxious and treat her seriously. She called me anxious too, and my level was 115!
Updated August 9, 2011
Had my 5th b12 shot today. Felt tired, achy and a little nauseous. I’m wondering if the cause of my low b12 is autoimmune gastritis. It could be caused by either the H. pylori bacteria, which is treatable with antibiotics and such. The other is not curable, but symptoms can be reduced with things like antacids and proton pump inhibitors. I’ve been puking lately been having heartburn, too. Something is definitely up with my stomach! Of course, I’m 7 months pregnant right now and my doctors will probably laugh when I tell them my symptoms. “You’re pregnant, dear.” But the cause of my pernicious anemia needs to be discovered and I’m probably the only one motivated to do so. Sigh.
Dec 1, 2011 – Myofascial Pain Syndrome!
My symptoms flared 1 week after I gave birth. They fluctuated in severity for 3 weeks and then for the last few days I’ve been in a lot of discomfort, very similar to the onset of my symptoms in January, which got me investigating possible diagnoses again. I think my stomach issues triggered the myofascial pain. However, I don’t think it’s fibromyalgia because my symptoms are all in my muscle-related. After getting b12 shots the fatigue is gone (other than having a new baby). I’ve seen some studies linking thyroid to fibromyalgia and myofascial pain. My stomach issues and chronic constipation was always my biggest concern growing up. I do think it’s all related. Here are some MPS (myofascial pain syndrome) symptoms www.thesethree.com/cmp/chronic-pain-symptoms.php
What is myofascial pain:
Myofascial pain syndrome, AKA chronic myofascial pain, is a disease caused by excessive release of one of the brains chemical messengers, acetylcholine.
The excessive release of acetylcholine causes the muscle fibers involved to shorten causing a palpable nodule, called a myofascial trigger point (MTrP or MTP) that causes pain, neuralgias and other symptoms that radiate in the same pattern between patients.
- Referred pain
- A taut muscle band that can be felt
- A sensitive tender spot in the muscle band (you may or may not be able to feel the pea size trigger point depending on the amount of muscle stress and where the muscle is located)
- Twitch response of the muscle by some mechanical method (i.e.: manual pressure or needle insertion)
- Decreased mobility related to the affected muscle – restricted motion
- Weakness in the affected muscle
- Breast pain and/or hypersensitivity
- Bladder difficulties – pain and/or urinary incontinence
- Chest pain
- Cognitive disruption – inability to concentrate
- Disequilibrium – lack of coordination, problems with balance
- Dropping things unexpectedly
- Ear – itching, aching, stuffiness, dizziness
- Eye – excessive tearing, eye lid twitches and/or drooping, pain, reddening, under eye bags
- GI (gastrointestinal) disturbance-diarrhea, indigestion, abdominal & stomach pain
- Gynecological symptoms – ovarian & genital pain, menstrual cramping
- Hearing difficulties – loss or ringing
- Facial pain
- Muscle cramps
- Paresthesias, unexplained – numbness and tingling
- Pelvic, groin and/or genital pain
- Sexual dysfunction – impotence, painful intercourse
- Shortness or breath
- Sleep disturbances – from pain due to muscles inability to relax
- Sinus problems and allergy symptoms – sinusitis, rhinitis, bronchitis, hay fever, dry cough
- Speech disorders
- Throat pain or soreness
- Visual disturbances
- Weight perception distortion- inability to gauge weight
I’ve had a tight back my whole life. This January, my symptoms went to a whole new level and have not died down for any extended period of time. I see a gastroenterologist in January and maybe she can help solve the connection between my dietary deficiencies and the sudden onset of symptoms!
January 13, 2012
My MRI came back clean (no MS) and thanks to a reader’s comments, I now think I have adrenal insufficiency, which makes sense given the year I had preceding my symptoms. I’ve started a blog on the topic here: http://greatgraves.wordpress.com/2012/01/13/adrenal-insufficiency/
April 2, 2012
Unfortunately, I have yet another theory…I notice lumps under the skin where I had the numbness and pain. I think it’s possible that these are hemangiomas. I know pregnancy can exacerbate them, but it does make make we worried yet again. I have read that beta-blockers are treatment for them, which explains why they helped me. Every time I exercise I notice these points for several hours afterwards. I’m off to the doctor’s on Wednesday to bring up my 100th theory on my illness. I did get checked for a liver hemangioma during pregnancy, which was causing me upper quadrant stomach pain. I don’t think I’m actively making new hemangiomas right now, but there are many points on my body where I think they exist.
- The first and I assume biggest, is on my right thigh and right hip.
- Next, my left trap, central/right back, and right cheek
- Next, both my upper arms.
- Next, upper left forearm
- Left calf
- Right leg, above the knee
- There might be others, but those are the ones I can notice and remember feeling!
I am hoping that if it was something more serious that something or someone would have picked it up on a blood test. The biggest scare is angiosarcomas – blood vessel cancers. But mine don’t seem to be growing anymore, which is good… My sister noticed a lump on my back, and then my friend mentioned a girl with a hemangioma on her hip after pregnancy, which got me on this train of thought, and seems to fit my symptoms — ischemia/numbness/pain surrounding these spots.
In other news, I was going hypo! Probably for a year now. My TSH was normal range, but free T4 and T3 were low. Just came off PTU for 4 days and some swelling is going away.
Update April 6, 2012
Ive been off my anti-thyroid meds (PTU) for a week now and I’m feeling much better except I have mild swelling all over. It’s worse at rest – morning and bed time – and better when I’m moving. Hope it’s still just a symptom of hypothyroidism. It felt like I had a vein inflammation condition last January when my symptoms started. It doesn’t sound at all like hypothyroidism, however, whatever it was, I feel like I haven’t completely recovered yet, although I don’t notice big blue veins anymore, which tells me that the inflammation phase is over and hopefully the veins will recover in time.
I’m seeing a naturopath next week to see if I can speed up recovery.
Update April 2012: interesting relationship between thyroid and adrenaline: http://tiredthyroid.com/feeling-hyper-when-hypo.html Thyroid and adrenaline (epinephrine) have an inverse relationship.
Latest theory: Hormone imbalance! Thyroid Stimulating Hormone (TSH), Cortisol, Estrogen, Progesterone, DHEA, etc… all of these hormones work in symphony. When one or two are out of whack, a person can have a hormone imbalance.
In my case, I had high stress (cortisol), high TSH (Graves Disease), and multiple pregnancies all at the same time. I was pregnant shortly after I got graves, I miscarried. I went back to school with a 1 year old. I had a second failed pregnancy. My dog died. My mom was sick. I started a new job. I got weird symptoms.
I think all of my hormones were completely out of whack. I’ve been reading about estrogen and progesterone imbalances: http://www.jacemedical.com/articles/Hormonal%20Health%20and%20Balance%20Information.pdf and a lot of the pieces seem to fit together! I think I had low estrogen with estrogen bursts that kept me feeling totally out of whack, and the hormones swings would confuse doctors because my symptoms kept changing.
I’ve gone on the birth control pill and notice a leveling of symptoms, although they’re still there, I feel much more balanced (it’s only been a week). I am in remission from Graves disease. I still have antibodies, but low enough that I don’t need any medication. Also, despite the fact that I have a baby now, there is little stress in my life and things seem to be settling down, although I suspect it will take a while. I want one more baby. Let’s hope I can do it!
Updated December 30, 2012
I went on SNRI (Effexor) and it has leveled out many of my symptoms and almost eliminated the muscle pain/fibromyalgia. I’m still not sure the cause of these symptoms but it’s clear to me that my veins are affected and they are often dilated (histamine?). I sweat and flush when I stand for too long. It sounds like POTS, but no passing out, just dilated veins and sweating, usually in my lower back, but my face gets flushed too, and I seem to hold a lot of water. But, I feel good most of the time so I haven’t been posting – just waiting to see what happens. Perhaps it’s an overactive autonomic nervous system, and maybe that’s why the Effexor helps?! Happy New Year everyone!
Update May 2014
Well, my theories on what is going on with me keep changing. In the past year I’ve had a dilated kidney and oxalates in urine, despite a CT scan that couldn’t find any stones. I had urinary urgency after eating. I noticed eating in the morning made my symptoms worse. I get cloudy urine (oxalates) and am still quite bloated at times, like the salt balance in my system is off. I still have issues with B12, occasional leg cramping and tightness in my right jaw, both shoulders and right hip and thigh, like circulation is being cut off (oxalate crystals?). I feel okay most of the time – I came off the Effexor. I think it helped to a point, but I was even more bloated on it. B12 shots help with pain. Still have questions about my how this all relates to my thyroid, and the mineral imbalances. I also, still get weird sweating right in the middle of my back.