Is This Fibromyalgia?

by Pamela

Hello Anne,


Thank you very much for assisting me in finding out if I have fibromyalgia.

I have had mysterious health issues since 2008. Many tests later, no answers. I have spent more time in Walk In clinics for the last 2 1/2 years than I have in my whole life. The staff know me by name.

My pain seems to be constant in my lower back and my neck region no matter what the day. Sometimes it is just dull or just feels stiff and other times the aching starts. I have sore eyes most of the day. A dull headache most of the day.The other pain I highlighted is off and on. Travels. Everyday something different. Pelvic and bladder aches are usually there everyday but they are a mild. Sometimes I think I have a bladder infection and everytime I check, it is clear. The doctor has called it Interstatial Cystitis. The bottoms of my feet ache often. I have TMJ and my jaw has felt like their muscles are achy and tired. My ears feel plugged or pressured a good percentage of the time. My arms and hands tingle, feel numb, or ache off and on. My legs lately have felt the same off and on. The pain is better during the day but worsens at night. I wake up unrefreshed everyday now. Most nights I have to pee in the middle of the night at least 2-3 times which is more than usual. Most nights I have to get a neck massage from my husband to get back to sleep along with a Tylenol. Tinnitus has been with me for at least 2 years. It gets very loud at night especially when my neck and back are hurting and I can barely flip in bed without pain or discomfort. The dull headache seems to remain with me during the night and first thing in the morning. If I sneeze or laugh, I pee myself a little. Frequent urination especially at night. Peeing and bowel movements seem more urgent now as I feel if I don't go when the urge arises, I may lose control. Sometimes urination is a trickle with a number of trips required to get it all out and other times it is a normal void. Tinnitus is prominent most of the time though gets louder at night and when the pain is stronger.

I got my first prominent flare up after starting an exercise program again. After 3 days, I felt like my lymph nodes had gone crazy as my ears plugged up, the lymph nodes at the base of my skull ached and were stiff, my throat felt a little tight or constricted, my underarms and breasts ached, my shoulders ached, my lower back ached and felt alot of presssure which seemed to climb up my back, my pelvic area ached on either side and sometimes in the middle, I had little bits of pain on and off in my upper abdominal area, my arms got numb,tingly and tired feeling, I was cold one minute and then I was hot, fatigue set in, head ache, sore eyes, sometimes my ears ached, mild nausea, low energy. It took 10-12 days for it to start to feel a little better and then came the snow. I shovelled the driveway, felt fine until that night- in the middle of the night I was in agony. My lower back pain got intense and climbed up my spine to my neck. My neck hurt badly, I had a dull headache, nausea, my hips, butt, inner thighs were very sore, I could barely walk. I felt like I had done a thousand squats. My calves spasmed all night, the soles of my feet ached, and I was exhausted. The pain changes in intensity across the day. The pain also feels like my back is burning or hot.

Since August 2009, I have been gluten intolerant. Since September 2009, I have had spasms in my legs on and off. Tingling, numbness and tiredness in my arms which I have never experienced before. I have since discovered a Nightshade Veggie Allergy and an allergy to MSG. My dust allergy has gone from mild sneezing to now, plugged sinuses so I have to take an antihistamine every night before bed so I can sleep without sinus discomfort. I am also on Nasonex to help as well. I was experiencing shortness of breath and thought I had asthma but since I did the Methacholine test, they have disproven that I have asthma. My breathing difficulties and other symptoms always worsen during windy days, humid days, and cold days. I got an endometrial abalation in 2007 and since then periods are almost non existent though my cramps have increased in the last 2 years when I am around my monthly time. I am extremely irritable, easily angered now. I am very sensitive to light and noise. I can't drive at night anymore.

I can't get warm sometimes at night even with 4 blankets, I am shivering. Other times, I am hot and throwing off the covers. My feet take a long time to warm up even under blankets. If I sit too long, I am stiff getting up. I am stiff every morning. My brain doesn't function as well as before as I forget names of common things or names of people, I can't get an idea out sometimes, I sometimes struggle to talk without tripping on words or stuttering. I can't concentrate or think sometimes. My eyes get blurry sometimes and I have had dry eyes for 8 months now. I have a hard time making decisions, and balancing my cheque book.

As far as trigger points, there have been times when I am in a flare up that if I touch a certain area that hurts, it feels bruised. I don't know if that is what you call a trigger point or if that is how it feels. My husband can massage the area or touch the areas affected without me jumping out of my skin so that is why I thought it couldn't be fibromyalgia. Also, up until a couple of months ago, I didn't have that much frequent pain - just aches here and there and my lower back, pelvic area and neck were never quite ache or stiffness free.

I have had CAT scans on my lower back. I have had CAT scans and ultra sounds on my pelvic and abdominal area for the mysterious aches that won't go away and they found nothing to explain them. I have had a Cystoscopy with no problems found. My family physician is totally puzzled. I have consulted a Neurologist, I passed all of his MS tests that you have to perform in his office and I am about to have an MRI this week on my brain and cervical spine area to find out the cause of my neurological symptoms in my arms, neck and back.

I am feeling sad that my body is failing me all of a sudden and I am only 45 years old. I have been in good health all my life - no drinking, smoking, doing drugs. I am a little overweight by about 40-50 lbs as I have lost 22 lbs already. No problems with blood pressure, heart or cholesterol. My blood tests all come back normal, including the autoimmune tests. I have an anxiety disorder which in the last 10 years has escalated though I am not on medication. I am frustrated because my husband has had to take time off work during the off days and has had to do more household chores that should be my job as I do not work. I cry alot when the health problems get to me but I still try to carry on a normal life even though it is hard to ignore some of the discomfort. I hate that my 2 kids see me like this and especially when I cry. I don't want them to worry and I want to be there for them when they need me, not sitting in a chair popping tylenols covered in a blanket, snapping or being impatient with them because I am in pain or exhausted.

Anyway, I hope you can help me figure this out. Between you and the MRI, it should give me some answers or at least, eliminate some possibilities.

You probably did not want all this information but I thought it might help put the puzzle together.

Take care,

Pamela

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Beta Blockers
by: Anonymous

Hi,

This might not help everyone but I personally have had a great deal of success with a low dose of the beta blocker Propranolol. Look it up, there is evidence that beta blockers can help. I can only say, I believe it made a huge difference to me, so much so that it stopped me from getting a diagnosis for more than 10 years as pretty much all the physical symptoms went away. Brain fog and memory issues not so good.

Best of luck to all.


Thank you for a very interesting comment.
In our group of contributors, a pain coach has very strong views about the easy use of Heart Rate Variability (HRV) which is one of the tools he uses for exercise in chronic pain. It allows to test the stress level before and after exercise. I have personally used it and it tells me if I need more rest time before exercising again. It gives a status of the sympathetic activity on the heart. If it is too high, I need more rest. I did ask him about beta-blockers if this was still too high. His answer was hesitant because apparently not too many studies have been done on this. There are also contra-indications to beta-blockers and it must be done with your doctor approval. HRV has been studied in fibromyalgia patients since the year 2000 but little has been published (about 30 articles only). Probably the difficulty of getting an HRV analysis was the reason. Now there are a few ones that are easily accessible (but how good are they?). I use a free app on my iPhone called Elite HRV with a Polar Bluetooth thoracic belt that I had already. There may be a subgroup of fibromyalgia patients where the HRV shows a high sympathetic activity and this is the group that may benefit from a low dose of beta-blockers. For me, I have an associated disease that would contra-indicate its use!
Anne

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Fibromyalgia
by: Anonymous

Just wish to say your article is as amazing. The clarity in your post is simply spectacular and i can assume you are an expert on this subject. Fine with your permission let me to grab your feed to keep updated with forthcoming post. Thanks a million and please continue the gratifying work.
Alina

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fibromyalgia
by: Anonymous

Ulrike, Australia
Yep. I can relate to all of you. An alkaline vegan diet had been suggested and helped me. You can look it up on the net. I feel the best when I have no obligations and can pace myself. Wading through non chlorinated water is the gentle helpful exercise for me. I take supplements d ribose , l glutemine, n acetyl cysteine, magnesium, fish oil and vital greens. After 2 years in an residential care facility I live now happily on my own with pain tho but I manage. Praying and a supportive women's group help me heaps. And meditation

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Fibromyalgia
by: Linda

Hi Darling

Yes it is Fibromyalgia, I also have all the symptoms that you have and also been to Hospital a number of times with suspected heart attack, then my gullet went into spasm and I could not eat or drink for a few days. I take two Clonazapam at night and Paracetamol and Tramadol, these do help, the Clonazapam has stopped my restless legs because it is a muscle relaxant.

Gentle Hugs
Linda xxx

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What is wrong with me???!!
by: Stacy

sudden at the end of February 2014. 1 night got some pains in my upper chest & heart started racing, went to ER they did an EKG, echo, & low stress test, all looked good. I kept getting racing heart & sometimes felt hard to breathe, would pace & get tingling in my hands & my L arm & leg would feel weak. Drs dx Anxiety & rx Zoloft I took for 2 days and quit cause made me fuzzy in the head & very nauseous. had infection in the L ear which i took antibiotics for but it felt like i had fluid in my ears & they feel "full" on/off, ringing in the ear a very little no hearing loss, on/off light headed feeling. PCP did blood & CT of chest to check for blood clots in lungs, came back great, heart lungs lymphs looks good then L arm would feel weird in my armpit & then the arm felt pressure, like swollen but wasnt. went to ER, gave me a shot of ibuprofen sent me home. had lost over 6 pounds in a week & wasnt hungry. forced myself to eat & when put food in my mouth my throat felt like it would throw up but wouldn't. day after CT my back started hurting around kidneys, PCP office did a mild urinalysis it looked fine. i kept getting the swollen pressure feeling in my arms at times in my head, I thought it might be a pinched nerve, left calf muscle was also feeling weak, i would cry cause I was both uncomfortable & felt I was losing my mind. I went to a chiropractor did X-raysI had some mild/moderate early degeneration of the cervical spine in my neck area and put me in a plan 3 times a week. the arm feeling has let up but still happens at times (today it's been my left arm). lower back hurts when I sleep, sometimes I lay down & get a pressure in my head, sometimes when sitting up too, at different times it will happen in one arm or the other, my fingers will get pains in on/off (mainly the thumb and pinky) I will get slight pains in my ankles and toes at times, I think the symptoms are improving but not gone. Yesterday, getting discomfort in my chest, pressure in my head, have been getting pressure behind my eyes on and off for a couple days and pains from my neck into my head and some on/off numbness on the right side of my head and the past couple days ill have times where I get pressure or tired eyes, like they're strained (don't know if this is from adjustments or not), then heart was racing so bad & hard I had my husband take me to the ER, dr said my heart rate was up said I was a tiny low on magnesium, potassium & thyroid was slightly off (overactive). put me on Propranolol 20mg 2x daily. I do get caught up on words here and there & lose my train of thought (not often though) Today, walked to the bus stop to get daughter, was 60 out but cold air, suddenly R ear inside hurt real bad, as air hit my neck it felt like stinging/burning, got in the house my husband felt my neck on the back & it felt warm too, felt like I had wind burn please help!! pcp appt 26th neuro apr 4. posted this on an MS forum but was told it didn't seem to fit

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Fibromyalgia pains
by: Karen

I've been having severe burning,throbbing pains deep in my elbows, the inner elbow area.It feels like I have something very tight wrapped around it. Aching deep inside and it's only the inner side of my elbows, what can be going on with it?

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Fibromyalgia pains
by: Karen

Hi,I was diagnosed about 3 years ago with this awful condition, and I just don't understand it at all.My pain is intolerable all the time especially in my arms, hands, feet, neck, legs, back and shoulders,,,I can't do anything!I've been wrapping my arms and hands with ice bandages which makes it feel a little better being
loosely wrapped.Is it hurting me somehow by constricting the blood flow to my arms & hands??? My arms & hands feel like they are being rung out like a rag, all the time and everyday.Help! I'm having trouble dealing with this everyday PAIN!!!


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Lyme Disease
by: Rachel

My mom has been to Mayo Clinic with all these symptoms,they said she was making it up, come to find out she has Lyme Disease, you would probably need to go an alternative doctor as the CDC has mainstream docs do blood test that have an element missing so they most often test negative, this is becoming an EPIDEMIC and after a lot research, there is a lot of thought that it might not be just ticks giving it to humans.
In the mean time if it is Lyme Disease, there is not a whole lot of docs that know how to treat it, and it will cost a lot of money! It is a terrible disease!!! Good luck on your quest!

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For Pamela
by: Anonymous

Hi Pamela

Your letter was so well written. I have had Fibromylagia for years now, since 1986 and I am 59 years old. I have all the symptoms that you have so clearly itemized. You are not crazy and don't let Drs express those thoughts. If they do, they don't know much about Fibromyalgia. I too would be interested in your test results and outcome. By the way the most difficult factor, restful sleep is never. I think my biggest issue is digestive problems. Leaky Gut Syndrome is on my list of symptoms. I could have written your letter, every word, and it would have expressed every feeling, fear, and challenge. I wish that I could speak with you, or by email. Thank you, I will keep your letter in file and refer to it often. I can hardly wait until the morning when I can read your letter to my Mom, who has Fibro also. Please take care, you are NOT alone.

I do understand and can relate to very word you wrote. Sincerely, Laura Ashby

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Fibromyalgia savings
by: Anonymous

Hello- I was diagnosed with Fibromyalgia about 4 years ago. I am currently taking Lyrica, which appears to be having the best effect on me. However, about a year ago I lost my job so it became very difficult for me to afford this med. I was online and found a discount card that I was able to use on Lyrica and it has made it alot easier for me to afford it again. If anyone is in a similar situation,you can definitely get one of these cards- its completely free plus you can use it for other medications that you may be taking too. You can go to medicationcoupons.com to print out a card.

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Tinnitus and Fibromyalgia after malpractice with anesthesia
by: Anonymous

I developed Fibromyalgia, Chronic Fatigue Syndrome and Chemical Sensitivity due to malpractice with anesthesia. That was the diagnosis of my neurologist and other doctors. I am struggling with terrible pain, and I was in bed without being able to move. Fortunately I met a doctor in Solana Beach who has treated Fibromyalgia and chronic Fatigue with success. I was able to walk again but unfortunately I don't live in California and I couldn't complete the treatment, but I hope I will be able to come back and complete the treatment and recover my health. He treats with acupuncture and although at the beginning I didn't believe in this kind of treatment it is the only one who has worked for me and for other patients with fibromyalgia and Chronic Fatigue.

I wonder if any of you has developed fibromyalgia, Chronic Fatigue or Chemical sensitivity after surgery with local anesthesia. Could you please contact me? I am going to sue the doctors for the error with the surgery.

Thank you,

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More questions
by: Pamela

Anne,

I read a theory online that alkaline foods/drinks are better for dealing with Fibromyalgia but I am not sure if that is on the up and up. Someone is trying to sell alkaline water to drink, someone else is selling some kind of bands to wear that deal with the fibromyalgia but I think, at least, the bands are a hocus pocus malarky. In reading the Alkaline foods, it seems I am already consuming mostly alkaline foods but I still eat some acidic foods for my health as well. Being premenopausal, I can't stay away from dairy too much as I need the calcium.

Vitamin-wise I take a multivitamin, 2 Omega 3 capsules, 1 Calcium/Magnesium/Vitamin D tablet, 1 garlic pill. I eat yoghurt, at least once a day or I take probiotics.

Pam

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Some more questions
by: Pamela

Hi Anne

I have no problem with you sharing my story with other people if it will help them.

The only thing I am concerned about is although you and I are both convinced it is Fibromyalgia, I have to have the MRI confirm first that there is no other cause. I should hear in March about the results as that is when I have a follow up appointment with my Neurologist. If someone wishes to contact me, I have no problem with that either.

As far as treatments, I use heat, showers/baths, tylenol (ibuprofen doesn't help at all), sleep, rest, nutrition and vitamins. I have done research on Lyrica and it said there was only 30% of patients who got relief from it. It also eventually fails to help anymore as your body gets used to it. So far, tylenol works for the most part. I still sleep okay but it is not restful. I don't want to go to prescription meds if I can deal with it naturally. Also, my pain can be very uncomfortable but it is not unbearable yet.

Nutritionally, I have been on a low carb diet for the last 6 months and have lost 22 lbs. Before I discovered my food allergies, I couldn't lose any weight no matter how healthy I ate and how much exercise I did. The low carb diet allows me to have 4-15g carbs a meal paired with proteins to slow down digestion so the body doesn't immediately convert carbs to fat. I am also allowed to have 2 - 15g snacks as well. I basically eat pure food with very little junk and I feel better. So in summation, I eat fruits, veggies, low fat meat, nuts and some dairy. I was eating dark chocolate for the health benefits but for some reason, caffeine in high quantities exacerbates my symptoms. Thank goodness I don't drink coffee or tea. I eat the occasional milk chocolate bar to feed my chocolate craving as there is not enough caffeine in it to bother me. The two allergies I have, have diminished what I can eat and it is harder to prepare meals for my family but I am managing it. I had half an urge to write a cook book for those as limited as me in food so that they too can still enjoy good food but that is for another day, I think. One of my favorite breakfasts is oatmeal mixed with walnuts, a pear or apple, raisins, flaxmeal and yoghurt with honey. A little over 4 carbs but very nutritious. I rarely use sugar now only honey as it has health properties to it, I have read.

Thank you so much for you support and quick answers to my queries. Look forward to hear from you.

Warmly,

Pam

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Yes, you have fibromyalgia
by: Anne Masterson

Hello Pamela

According to the automated calculation of the above, your probability of having fibromyalgia is close to 100%.

Your pain drawing confirms it.

Thank you for describing so well your history and problems. I cannot see anything that would go against fibromyalgia. Yes, you may have associated diseases but it all fits with it.

You have not told me about your treatments and supplements you take or even your typical diet.

I would like to publish your history on the website. It would become your website page. This would help people to see that they are not alone. It would also allow some to give you support and what they have done to counter the problems. I would be quite happy to give you counseling. This could help others as well. Just tell me if you allow me to put up your story with or without your first name and/or surname. Unless you ask for, I do not put up email addresses. If someone would like to contact you or the opposite, I always ask authorization from both sides. The page you would appear on could look like the following

http://www.fibromyalgia-information-relief.com/the-lions-roar-no-more.html

If you prefer to remain anonymous and not have your story on a page, I will answer your queries privately by email.

Best wishes

Anne

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