Lady Gaga – does she have fibromyalgia?
Welcome to the latest in our series of fibromyalgia blogs where we explore your experiences of the early signs and symptoms of fibromyalgia. You can see all our previous fibro blogs here – https://patienttalk.org/?tag=fibromyalgia. Well worth it as there are some great fibro hints.
All of us are individuals who may suffer from the same medical conditions but in very different ways. We hope that you will use this blog to share with our readers your fibro story. In particular the early signs and symptoms of fibromyalgia.
For most people with fibromyalgia the key symptom is widespread and long term pain. The effect on our lives can be debilitating. People with fibro also may suffer from what is called Allodynia. This is where a person feels pain from a source which normally would not provoke pain. A good example of this would be a change in temperature or sometimes just even touch. Nerve or neuropathic pain is also common. Check out our previous blog on the subject – https://patienttalk.org/?p=281.
Common signs and symptoms of fibromyalgia can include:-
a) Fatigue. This in some cases can be extreme. Please check out our previous blog about ways of fighting fatigue – https://patienttalk.org/?p=239
b) Related to this is what is often described as “Fibro Fog”. These are problems with both memory and concentration which lead to a sense of confusion.
c) Irritable bowel syndrome. Normally either diarrhea or constipation but sometimes bloating as well.
d) Sleeping issues which can include insomnia. For more information please take a look at this blog https://patienttalk.org/?p=246.
e) Depression and anxiety.
But, of course, fibromyalgia is a syndrome. A syndrome could be described as a “constellation of symptoms”. This means that each person with fibromyalgia experiences it in a unique way.
This is where you come in. We would be very grateful if you could share your experiences of the signs and symptoms of fibro with other readers. As always we are very interested in anything you have to share but you may find the following questions a good guide:-
1) What was your first symptom of fibromyalgia?
2) How long after it appeared did you get diagnosed with fibro?
3) What sorts of pain do you experience with your fibromyalgia?
4) What would you say is the worst symptom of fibro?
5) How do you manage your symptoms?
Please feel free to add anything you think will be of use or interest in the comments box below.
Thanks very much in advance.
My symptoms progressively got worse through out this year but it hit really hard in June. I first started with nasal congestion with no relief other than taking antibiotics and steroids in the beginning of this year. Then after seeing my pcp on multiple occasions and coming back from vacation my symptoms became very apparent. I had burning muscles, my hands and feet felt like pins and needles were constantly pricking me, painful joints, and extreme pain in my shoulders and the nape of my neck area. I was extremely tired and wanted to just lay in bed. My pcp didn’t know what was going on with me. My heart was racing all the time and all I can say was that it felt like if I had the flu all the time. She finally referred me to a rheumatologist who diagnosed me with fibromyalgia. He prescribed me lyrica twice a day which has helped me tremendously but I think I need a higher dose now since my pains and fatigue are starting back up. I haven’t been able to start an exercise routine yet which is really killing me because I was a very active person until this fibromyalgia hit me. I blame 2 stressful situations prior to this year that sparked the fibromyalgia to become active in my system. STRESS is the culprit! My symptoms started in February 2016 and became stronger in June and then I was diagnosed in July. I was out of work for almost 3 months before I could return and I had to return to part time. I hope this post helps.
I think my first sign was a piched nerve on my spine from a bone spur. I went off work twice and in excruciating pain both times. A chiropractor got me back n my feet and back to work. Shortly after fell down the stairs at home and at work. Then I fell again outside at work and broke my nose
My right foot was sore for over a year after I jumped off a boat at work. Then I got a left rotor cuff injury. Divorced. Moved. Settlement not in my favor. One year secondment out of town. Too many long shifts and travel. Not enough time to recover. Sold and bought a new home. Vacation in Australia and was robbed. Could not get used of 12 hr change in time started getting restless legs syndrome upon return to night shifts. No time to unpack home from move and combined families from 3 to 6. Body was picking up cold from damp areas and feeling tired. Could not sleep well. Body was aching. Thought I had the flu. Crawled in bed and body didn’t stop aching with flu like symptoms gwtting worse. Nothing worked and depression and anxiety were my new friends.
I saw my Dr often and was reluctant to try meds til I could take it no longer I was diagnsed I believe 6 months into it and with extreme sleep apnea. Within a year I was diagnosed with diabetes and chronic fatigue. My worst symptom the first year was I couldn’t deal well with the pain and it took a while to find cymbalta for fibro, depression and anxiety. Was in bed or on couch. Thats it.
Second year I tried to get out more but my sleep was aweful and I cancelled a lot of lunch dates and appointments. Found that two sleepig meds is best as one would stop working for a while and the other covered it off. Third year I took a 6 week course in the community dealing with chronic ain anbit is where I learned to. Do
1 First sign – painful hands, burning aching feeling with no reason on x-rays
2 first went to specialist at20 and told all in my head, at 46 officially told could be fibromyalgia
3 lots of hot, achy joints, neck pain, foot, hand, leg, shoulder pain can besharp, throbbing, b urning
4 fatigue – constantly feeling tired sometimes due to lack of sleep from pain
5by listening to my body, resting where possible, having a good relationship with my dr, supportive family
I strongly urge anyone with the symptoms, whether formally diagnosed or not, to find a local support group. Spending even an hour or two per month with people who understand precisely what you are going through can be such a relief. “I’m not going mad! That IS what happens to me. Forgetting my own phone number is not unusual!” Our nearest & dearest can never quite understand, even when they are doing their best & should be given “carer of the decade” awards by the bucket load.
The best groups are ones that manage to combine a social atmosphere with inviting speakers on various useful subjects (benefits – best way to complete those blasted forms etc, pain relief option, mini craft workshops – sharing our own skills makes us feel useful again).
sapelle1120 It seems I have fibro but not diagnosed. I’ve had different symptoms ever since I could remember. I had migraines, pain in my neck , stomach pain, weight gain, and a lot more. As I got older, the pains were happening more frequently and more problems were arising. After the birth of my daughter in 1997 I was diagnosed with schizoaffective disorder. In 2012 I was experiencing seizure like symptoms. I left my doctor about a year ago and found a wonderful PCP. I’ve been in and out of the hospital so often with every sort of test imaginable coming back negative. They are getting to know me by name. I had to stop working in 2013. The pain is head to toe constantly since then. It has disabled me. I walk with a cane and lose my balance easily, I have brain fog. I’m constantly constipated and have gas and bloating. There are so many worse symptoms that I care not to mention. I think the worse is the loss of the use of my hands. I went numb and can’t hang on to things. I can only use two fingers on the left hand and four on the right. I’ve been fighting for disability for years and just last week I was approved. It could take a couple more months before I start receiving it. I live in Elderly/Disabled housing so my rent and heat is taken care of. My friends have been supporting me over the last couple of months because the child support stopped now that my daughter is 18. I’m 42 and feel 92 years old. If it is fibro, it is definitely going to kill me. From reading the blogs I have all if not most of everyone’s symptoms. It’s so bad that during the 2-3 hours of sleep I get a night, which isn’t restful, I think I won’t wake up and die. And let me tell you I wish it a lot.
First symptom was chronic fatigue, I could be doing something and my body would go into complete shutdown all I would want to do is lay down and close my eyes. The pain is like nothing I’ve had before and in places you wouldn’t expect, laying on my once comfy bed now feels like laying on a block of concrete.
I have had fibromyalgia for 13 years. My first symptoms were lightning storm-like headaches from the base of my skull shooting forward, extreme fatigue, lack of balance and excessive confusion.
After multiple invasive tests and 5 years, I was able to diagnose myself. I went to my doctor and told her what I had and, after more unnecessary testing (repeats of the tests already given), I was diagnosed.
I experience soreness, stiffness, extreme tension, fatigue and non-restorative sleep, insomnia, headaches, IBS, fibro fog and aphasia, throbbing pain in my lower shoulder blades, stabbing pain in the base of my skull that shoots forward, swollen and/or feeling of swelling without physical symptoms of extremities, dizziness, inability to stand or sit for long periods of time, pain in my feet, Costochondritis and many more. A recent list of 200 symptoms show that I have 168 of them.
The worst pain symptom I experience is the base of the skull and the shoulder blade pain. It feels as if there is someone inside my rib cage trying to push on my back and ribs to escape.
The most frustrating symptom for me is the fibro fog. I am a professional woman and a writer. The embarrassment is so difficult.
Unfortunately, I haven’t been doing a very good job of managing my symptoms. I sleep with a heating pad, take Epsom salt baths, stretching and yoga, hot stone massages when I can afford it. I take flexeril to aid in my sleep and ibuprofen for the inflammation. Looking for natural and alternative treatments now.
Mine started about 5 years ago, with just generally not feeling well. Then I was having cognitive issues where I couldn’t remember words or how to do simple tasks. It got really bad about 2.5 years ago with the fibro fog and weight gain and pain and numbness in my legs that would spread to my hands and face. It took me 2 years to get someone to listen to me. I have a pretty high tolerance to pain, so to me, the worst part of fibro is the fog and lack of ability to concentrate at my job. (i HAVE to work)…
I first started showing symptoms about 3 or 4 years ago. It started what I thought was gout in my big toe and hives that looked like shingles across my shoulders and hands. I didn’t get diagnosed until Feb of 2013 when I found a different doctor…I went see him because of excruciating pain in bot hips that wouldn’t go away no matter what at the same time I had hive like blisters on the backs of my hands and trouble walking due to the pain in my feet….I was also having horrible headaches and problems with balance. From there on it was difficult to do my job because I was in such pain sitting in the car to drive then be on my feet for 8 hours at work where I had to climb ladders and lift and carry heavy parts I would be in so much pain that I had to quit my job. I major issues with temperature changes…I now carry a sweater with me everywhere the changes in temperature feels like fire burning and everything hurts like he’ll
I have yet to find a doctor willing to diagnose me with FIBRO…I have no doubt in my mind that this is what is going on. Had Lupus panel of bloodwork done and it was negative for ANA and RA. I had a higher level of C-reactive protein than would be considered normal but my doctor didn’t think it was a big deal. I had to continually go back to the doctors because of my worsening pain and constant fatigue.. I finally convinced my PCP to get me a referral to see rheumalogist. That appointment is on the 20th. I had a wonderful career blossoming until all my symptoms plowed me over just last month. Had to take medical leave from my job but can’t even guarantee I will ever be able to work again. I’m trying to be hopeful. Medicines have caused my IBS to flare again. Depressed and anxious all the time. thinking of alternatives so I can cope with the pain plus all the mental crap that follows suit.
I’ve been thinking back as to WHAT started all of this. I really have no idea but last month was my breaking point. I remember even 3 years ago being pregnant and bed-ridden practically due to the pain from carrying a baby. I do think all of “this” started before then too.
just earlier my entire body was aching & the weight from my laptop was really starting to bear down on my legs and hurt!!!! holding a 10 lb baby for more than a couple minutes just kills my arms!!!
I’m trying to find out why this is happening… it is helpful though to know that i’m not alone…
Sounds like you have fibro I remember when Kerry was a baby nineteen years ago my back went into a giant spasm and I nearly dropped her and since have been unable to lift anything also I have cervical spondylosis, but my fibro started with pain in the occipital muscle area of my head just under the rear of my skull it was so bad I couldn’t wear any thing that had a collar near it and from then it gradually involved all the areas of my body especially my legs, arms, chest and groin areas and there isn’t a pain pill that can take the pain away without rendering me unconscious as a result have suffered very bad low moods and clinical depression and various internal organ problems due to muscle spasms, my bowel has ulcers and a spastic colon because my muscle control is not working properly, my eyes are blurred and dry all the time and my nose is blocked all the time and my bladder area is always growing me hope this helps you
I do not know about “first signs” as the rest of you speak of. All I know is that I had developed Mono for the second time in my life at age 37(first time at 21). It took me a year to recover from that. Shortly after getting out and around I discovered muscle fatigue which worsened over the course of two years. Ever since then, the symptoms of fibro have worsened becoming more painful and debilitating. It not only effects my muscles but my entire body in many ways. Maybe the symptoms began earlier for me than I had originally thought. I have suffered joint pain, stomach and bowel problems, odd skin disorders and the like, but, just chalked that up to life. I always suspected the mono virus as being the culprit. Now that I have read the other comments, that may not be the case…I guess?..who knows?
I started experiencing fibro symptoms after numerous surgeries in my early twenties. I never felt right. I started suffering from depression, anxiety, PAIN, exhaustion, sleep issues, lactose intolerance, IBS and gluocoma. I couldn’t exercise anymore or do what I used to do prior to the surgeries. Twenty years later Jan 2009 I couldn’t get out of bed for 1 week. I was in dibilitating pain. I went to my GP and he told me he thought I might have fibro. I went and saw a Rheumatologist and after a million dollar work up, it was confirmed. Since that point i lost EVERYTHING. My career as a Banker, my home, my independence, my health, everything. Now I’m permanently disabled at 43. I’m a single mom to an amazing 14 yr old son. He’s the reason why I get up everyday. Without him I would have taken my life a long time ago. As far as my health goes, all my systems are shutting down. The only time I leave my house is to go to the Dr. Now I’m dealing with enlarged lymph nodes in my lungs. The Pulminologist did a biopsy and can’t figure out what the problem is. This disease with eventually kill me.
So sorry to hear this ;( it is a horrible thing fibro. I had a stroke aged 30 two years ago and I too am a single mum to a twelve year old. It is hard work when you haven’t got the energy. I don’t have any support from my family and I don’t have many friends. It is excruciating pain sometimes and makes u feel so isolated and the anxiety is terrible too. I do hope they find something to help us soon. Lisa x
IBS & insomnia in childhood. Random stabbing pains. Was almost always ill with undefined “virus” from quite young. Easily tired. Started to suffer depression in teens. Things got worse after severe Glandular Fever at 18/19 followed by 2+ years of regular relapses. Not formally diagnosed until I was 40.
I started with a fall on ice as back and neck never recovered and I was unconcious for a little while as I knocked myself out about thirty years ago and slowly things got worse and i have arthritis in multiple joints now
1) What was your first symptom of
fibromyalgia?
I was 18 when I first developed the earliest symptoms of fibromyalgia. I
remember feeling achy and exhausted, akin to the way someone might feel when
they are getting the flu. Sometimes I would also feel sore and stiff but I
attributed that from dancing too much and staying up all night in college most
of the time! One of my best friends (who
had another condition) and I called those days our “old lady” days, as it took
us forever to walk anywhere. Usually all of the symptoms went away when I got a
good night’s sleep or took a Benadryl for my allergies.In my 30’s I remember feeling lumpy sore
spots underneath my skin on top of the other symptoms. After careful research,
I actually diagnosed myself or rather, “intuited” that I had Fibromyalgia. I
didn’t go to the doctor, as the flares were few and far between.(Note: in 2008 when I was 52, I was diagnosed with Chronic Fatigue Syndrome so the combined exhaustion for both was terrible…)
2) How long after it appeared did you get
diagnosed with fibro? 23 years later after I tested positively on an
Antinuclear Antibody Test. My Internist was worried I had Lupus so I ended up
going to a Rheumatologist, who later confirmed what I suspected.
3) What sorts of pain do you experience with
your fibromyalgia?
Overall soreness throughout my body; very persistently painful spots just on
top of my left elbow, upper left shoulder and arm, left hip, left buttock, front of both thighs, both hands feel sore and stiff mostly
and their temperature is either too hot or too cold, which drives me nuts. My knees kill me but I attribute that to osteoarthritis, which is in both. Sometimes I feel feverish or chilled, also. As I have aged, these
symptoms seem to worsen and migrate through to the opposite side of my body,
e.g. right hip, etc. or take residence in new places, such as just underneath
my left collarbone. It’s weird. I am
really bad in late fall and winter – can’t take the cold – but in spring and summer I feel great, considering.
4) What would you say is the worst symptom of
fibro?
For me it’s the insomnia, as it just worsens my symptoms and makes me feel
like a hateful lunatic the next day. I do have a very high pain tolerance (I
trained my mind to get through it given that I have to work what is a very
hectic, stressful job) and can cope with it for the most part), but if I am
tired? I move very slowly to the extent that walking up steps is reallllly hard. The difficult part is that the fatigue affects my mood: I feel cranky…mean…impatient… but I still move. My
rheumatologist encouraged me to keep walking and exercise
and it helped me.
5) How do you manage your symptoms?
I don’t take a lot of medication, honestly. I once took Lyrica and it
actually made me feel crazy, so I avoid that drug like the plague. Occasionally,
I will take a Neurontin or 2 Aleve or both drugs to alleviate the pain when I
am in flare, but the Aleve and Neurontin combination “zones” me out so I try to take them on a Friday night. Sometimes I get a deep muscle massages, also. It hurts terribly
but can leave me pain free for a few weeks, as doing so gets the kinks out for
me. More importantly, I go about living my life and still function even if I
feel awful. I really have no choice, as I support my family.
I wax philosophically here, so bear with me, but in all honesty, I just don’t
“give in” to the pain. My mantra? “I control “IT” but it DOES NOT control me”. (Please
note that I am NOT inferring that others do give in to it, but rather am
expressing my own coping strategy.) If I don’t follow this mantra I can assure
you that my state of mind and outlook on life will be gravely affected by that
choice. So, regardless of how I actually feel, I keep pushing on. I guess it’s
a kind of a life or death mindset to me – and always has been. I used this as a
tool to get me through breast cancer, 4 horrible weeks of radiation treatment
(which is HORRIBLE for Fibro sufferers!!) and had a hysterectomy. It worked. Or
maybe I am just unbelievably stubborn and willful!