Fibromyalgia...please check your hormones!!

Bones, joints and muscles
1

Hi all

Just wanted to post that I have had a terrible year, and thought I had Polymyalgia or Fibromyalgia, and sometimes I even thought I had bone cancer - because at age 50 and completely out of the blue I developed severe bone/ joint and muscle pain which over the course of a few months just got worse and worse.

It started in my left arm and shoulder, moved into to both shoulders and upper back, and was also in my hips and lower back. All of my limbs ached. I had all the FM tender points. I was never sure if it was joint, muscle or tendon. I always had a low nagging pain but when I moved in a certain way it was an acute stabbing pain which flared up and made me feel light headed and sick for a moment. Never once did I suspect that this hell was all to do with hormones. I knew I was perimenopausal, due to missed periods, but I did not have the usual symptoms such as hot flashes or sweats.

I had lots of blood tests and was told I had absolutely no inflammation. My male GP who I have seen for years 'pooh poohed' the idea that my pain was due to menopause when I tentatively brought it up with him. I was at my wits end - I was just in so much pain and it seemed no one was really taking me seriously. I really am quite a 'buck up' sort of person usually, and I thought I had a high pain threshold, but this was in a different league. I was just so weary of it all. I was even considering having my two dental implants taken out, at huge expense because it is not a simple procedure (not to mention missing front teeth, and the thought of dentures!) as I read on some weird website that titanium allergy can cause the same symptoms and trigger Fibro.

However, after discovering from a practice nurse during my smear that low estrogen CAN cause joint pain, I went to a female doctor to discuss it and had some new blood tests. Again, NO inflammation, no raised CPR or ESR, no rheumatoid signs. My ESR is only 2! However, the hormones were all over the place and she started me on the HRT Prempac-C immediately.

I was told it would take from a week, to up to a month to see changes, but I am really not exaggerating when I say that today, three days later - I feel like a different person. I still have the same pains - they have no miraculously gone overnight - but it feels like it is on the move. You know that way when you have been terribly ill, and you wake up one morning and you know you are on the mend...the pain changes somehow, it moves, and is not so intense. The strange chemical taste I have had for almost a year is gone, so is the sunburn tingling skin. Hormones!

I genuinely have never felt anything like the pain I have been having for almost three months. It was intolerable. Just shows you how these hormones (or lack of them) can affect us ladies. I didn't have a lot of other symptoms of menopause that women mention but I definitely got more than my fair share of the joint issues.

I totally underestimated just how much hormones can affect the body. When I first posted on here, I was sure I had some systemic disease that would need steroids, I thought I might end up in a wheelchair. It really was that bad.

Please please, if you are a 'certain age' and are struggling with uinrelenting, worsening pain in your joints, muscles or limbs...please have your hormones checked!

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I am glad you eventually got to the bottom of it and I am glad the treatment is working so quick. I had fibro diagnosed more than ten years ago. But if I go over and have new tests done it always ends up that is it the fibro causing the problems as it is not chronic. But good advice from you to anyone who needs it. Stay well x

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Hi, When you say your hormones were all over the place, what exactly do you mean? What kind of tests did your doctor do? I'd like to be able to ask for specific tests.....

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You need to ask for an FSH (follicle stimulating test) which will show if you are in perimenopause. Your GP should know all about this test.

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Thanks! smile

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Hi cant believe what i have just read me to a t omg have i suffered for over 5 years,i always knew it was hormone related also believe very strong that its autoimmune related,my doctor tested for ra came bk positive then 18mths later said it was negitive honestly thought i was losing my mind x

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diag with f/m 4years ago

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Iam 56 and i started with all this when i started the change how i have not lost my mind i dont know,like you said get ya hormone levels checked please its bloody horrible xx

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Hi Lesley

I am so sorry you have been having such a rough time.  I too have had the most awful year with symptoms not dissimilar to yours.  I am so fatigued, nauseous, with terrible pains coming and going everywhere.  At first the doctor thought I had fibromyalgia and referred me to a rheumatologist.  He said it wasn't although he could see why my gp might have thought it was.  Then I had an endometrial ablation as my periods had become soooooo heavy.  The operation has helped a bit but not to the extent the consultant said it would.  Then I began having scary headaches with pulsating at my temples and numbness in my face and twitching all over the place, so then I was off to see a neurologist.  By this stage I was convinced I had either a brain tumour or multiple sclerosis - the latter being my real fixation.  He confirmed I had neither of these but mentioned anxiety and asked me what age I was and did discuss hormonal imbalance.  I haven't had my hormone levels tested in about 8 or 9 months but maybe I should.  I still really haven't got to the bottom of what is wrong but after being on this site and reading other people's posts, it really does all sound hormonal.  My pain started in my right shoulder and upper back and is really very painful most of the time.

Is that HRT that you have been started on?

Thanks

Joanna

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Hi Lesley

I really need to speak with you.  I am feeling iller than I have ever in my life.  I am being passed from pillar to post with one thing and then another - fibromyaglia, perimenopause, IBS.  I am so sore, sick, depressed.  I am 49 and don't know what to do.

Jo

x

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Hi Lesley, I have suffered Fibro for over 20 years, but only recently diagnosed. Your story is very similar to mine, except that I am now 5 years period free, and still no better. I got fed up of seeing the Doctor, at 37 years old I was supposedly pre-menopausal, at 46, and after blood tests, they confirmed I wwas definitely " on the change ", so it was that which was causing my terrible symptoms, then I stopped having periods at 53 years old, and they said it was Post Menopausal problems. Last year I was prescribed HRT, first in vaginal cream, then pessaries ( as I was suffering severe dryness ), then tablets, then patches, but they couldn't find anything suitable which would help me. The tablets and patches involved having a bleed each month, as I haven't had my womb removed, and the bleeding just kept on and on, it wouldn't stop, so I couldn't have HRT. I am convinced this problem is hormone related, but there isn't a way out for me - the HRT experience I had left me symptom free for over a year, then everything came back with a veangence, which is probably what will happen with you, when you find you can't have it any more, and I would far rather suffer while I'm young enough to cope with it than when I'm in my mid 60's or even 70's. Recently I started having palpitations and anxiety attacks, as well as all the pain etc., so I returned to the Doctor, and he put me on Propranalol ( beta blockers ) to stop the horrendous and scary palpitations and also the terrible sweats I was suffering. I was diagnosed by a rheumatologist in January, and I am now suffering like mad. I have to say I agree with you totally about this possibly being a hormone problem, but for me there is no magic HRT fix. Good luck and may your good health continue.

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Joanna;

Idiopathic Intracranial Hypertension.

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Hi Joanna, I'm so sorry you are feeling so bad - I can relate to everything you say you are suffering, and a lot of your problems could be Menopause related, as I was much the same. Some days I don't know how I got through, I felt terrible, and I know many women who suffered just the same. HRT didn't sut me at all, I bled very badly on it, even when they tried it again after my periods had stopped. Menopause really IS the pits. I had a whole year feeling fine once my periods stopped, when I was 53 years old, then I started suffering again, and have recently been diagnosed with Fibro. I still think there is a strong link between the two conditions. Hang in there, it's very scary, but the more you worry, the worse you will feel. Try joining a Menopause support group, and you will see there are other women suffering like you are, and you don't feel so alone when you get chatting to others in the same situation. What really angers me is when people tell you that it's all a natural part of a woman's life - it certainly ISN'T normal when you feel so bad!! xx

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progesterone will help intracranial hypertension, but estrogen makes it worse.

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i'm glad i found this thread.  i've been living with fibro for a long time.  my chiropractor says i am an interesting case and he believes i was born with fibro and would never have succeeded at a physical career like ballet or sports.  i did those things growing up but always seemed to take a long time to bounce back after an event.  from 18 on, i started noticing actual pain and tightness but didn't know there was something to be done about it.  i was officially diagnosed ten years after that by an ear, nose and throat doc who noticed how stiffly i held myself.  i was referred to a rheumatologist and started the long process of learning to deal with fibro.  i was already being treated for depression, insomnia and anxiety and then i discovered food allergies triggered more intense fibro symptoms.  joy.  fast forward to hurricane katrina, moving to a new city, followed by divorce, a hysterectomy and dealing with being a single parent.  i was so sick the new rheumatologist suspected lupus and she still has not ruled that out.  recently i tried to go off the plaquenil she prescribed three or so years ago and that triggered a flare.  the last several months i noticed i was waking up several times during the night, was beyond crabby and just not myself.  the pain had cranked up to the point i didn't want to go to work anymore.  i made an appointment and asked for hormone testing.  at 47, with one ovary, i am post-menopausal.  lovely.

i was given a stronger, time-released sleeping pill, pain meds (finally) and instructions to come back in a month.  i'm not sure what i'll do about HRT but i have a little time to so some research.  i'll see the rheumatologist in two months.  i am back to seeing the chiro weekly instead of every other week.  i am slowly going broke keeping up with all these visits.  i still hurt.  heating pads and stretching help but i'm not up to exercise yet.  i look forward to the outdoor pool opening so i can attend deep-water aerobics classes again.  

i was not prepared for the bonus round of menopause and fibro.

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Hello Lesley,

I am sorry to hear you have been through so much, it really can get to you... I am pleased that you have got to the bottom of it and are feeling much better.

I have had a horrible year and still going on.....

I've thought I have had lots of different things wrong with me over the past year, I get

Hot sweats

Severe nausea

Headaches

Feel like I've got the flu or a cold but never get them

Really heavy aching legs especially sometimes all over, feel like I can't walk

Backache, neck ache, shoulders

Unbalanced

Anxiety

Sometimes bowel differences

I can get these symptoms anytime but always seem to be around my cycle but can last 2 weeks

I just never seem to feel well

My gp thinks I have fibro but my gyny isn't sure what's going on has offered me endometrial ablation but the irregular bleeding is the least of my problems......

Don't know what to do or think is it fibro or peri menopause??????

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Hi my name is Susan - I have recently started having issues with my stomach and muscles - nervous tension - my doctor did many tests like thyroid blood stool ct scan on torso- nothing came back abnormal- when I returned to say I still wasn't feeling well he mentioned fibromyalgia- and prescribed cyprelex - I am not depressed- I do get edgy as I am thinking something is wrong and it probably isn't helping. I also have troubles sleeping- I wake up and can't get back to sleep- or go to bed tired then can't sleep. I am 52 and am going through menopause- I feel it must be hormonal and not sure why he jumped to Fibro without testing my hormone level first. 

I am thinking I want to get a referral to a gynaecologist and start over. 

I would appreciate any information you can offer to point me in the right direction - I don't want to go on anti depressants if I don't need them. Thanks

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Hi Lesley , my symptoms are the same as yours . Please can you let me know how

You are? And what has worked for you? I'm worried I have Fibro and hope it's just

Hormone related ..,could really do with your advice

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Hi Ladies!  I am new to the board but was very interested in your thread.  I am 51 and was diagnosed with fibro in my late 20s.  I had always had extreme PMS and anxiety until my mid 40s. Meds helped which was great but there were always side effects.  I began to exercise daily around 45 and dropped about 40 lbs.  I started feeling so much better until recently.  In the last 2 year the fatigue and aches have returned. I went to the doctor and was found to be anemic and have hypothyrodism (funny all those years tested fine and kept gaining weight, get thyroid issues and lose weight). I now take iron and generic form of synthroid.  In the last year I have started having extreme fatigue and muscle pain along with the aches.  I chalked it up to too much exercise.  I began to reduce my workouts but it didn't help.  I was dragging my butt to the gym and treadmill feeling like crap.  Then I missed my period last month and started having an eye twitch the same week.  The twitch has continued for weeks.  I went to my doctor who said it was probably electrolytes were off and ran blood work. They were fine.  He then said I needed to be worked up by a neurologist for ALS. Needless to say I stopped sleeping, eating, and living and went into a terrible depression being scared out of my mind (my grandmother died from ALS and I am at the age it hits).  Started having twitches all over the place.  Dropped 7 lbs. (another sign of ALS).  I went back to my doctor and asked for my hormones to be checked since I had missed a period.  The results showed I was in menopause whatever that means.  In the mean time, I have started having more nerve pain in my face that comes and goes along with the twitch.  Sigh...I decided to take things in my own hands while I wait for the neurologist appointment.  I have set up an appointment with my gyn since my doctor doesn't seem to be concerned with my problems.  I am also having my eyes examined in a couple of weeks by a "real" eye doctor.  I was glad to see others were experiencing some of the same symptoms (ok minus the eye twitch - which is the real issue and what triggered the neurologist appointment).   I am still scared out of my mind but have a little hope maybe its just a lack of hormones. Thanks ladies for giving me that shred of hope.