Could it be Fibromyalgia???

Bones, joints and muscles
1

Hi all,

I’ve come to this forum because I am really struggling with what is happening to me. I  would like to share my experience and possibly get some advice. I haven’t had a diagnosis but I suspect I may have fibromyalgia and/or some form of R.A.

 

For the past three years, I have been experiencing, unexplained muscle aches, joint pain, pelvic spasms, lower back pain, pain in neck, and shoulders.  I originally put most of these symptoms down to the woman change but that has now been ruled out due to a full hysterectomy.

My thyroid function was just below normal, and after taking medication for this it is now normal. I was vitamin D deficient, but I am now taking Vitamin D supplements and the level is higher now.

 

Recently I have been experiencing difficulty carrying out simple tasks, such as cooking, washing my hair folding laundry and extreme fatigue after any physical activity.  Walking to my local bus stop is painful and I end up walking like a drunk robot. I lose my balance a lot, my concentration/memory is bad and my ability to ‘find the right words’ in conversation is a problem. Terrible headaches, painful feet if I walk for any length of time.  I wake up feeling as if I haven’t slept, my entire body is really stiff and in pain, my hands feel swollen and I can’t grip things properly.  This usually eases off after an hour or so.

 

I’ve seen a Neurologist – who has ruled out a neurological reason, but  he did note that I was ‘unsteady’ on the Romberg test, and he mentioned that I found tandem walking difficult and I have a waddling gait. (drunk robot)………..  I had an MRI scan for my neck and upper spine – (results to come), and I am waiting for an appointment to have an EMG  for muscle testing.

 

I have been seeing an Endocrinologist and had loads of scans/blood tests, most have come back normal -  my ESR -27 and CRP- 3.8 then 2.7.   She wrote to my GP and asked her to refer me to a Rheumatologist. My GP called me in and said she didn’t want to refer me to a Rheumatologist until I have more blood tests.   So she ordered yet another set of blood tests  which will probably come back ‘normal’.

 

I have just spent the past 3 days in bed because, I had two appointments last Thursday and Friday – both long bus trips and long waiting times. On Saturday I felt like I had the flu and couldn’t do a thing for two day 2 days.

 

After a lot of researching and ruling out other similar conditions, I came across Fibromyalgia, and suspect FMA and/or possible R.A  is what may be going on with me.  After coming across this forum and reading posts from members with similar symptoms, and experiences I really hope  someone can shed some light on all of this.

 

REALLY SORRY FOR SUCH A LONG WINDED RANT, but I’ve had a crappy couple of days.

 

Thanks Ela808

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Hi it sounds to me that it is fibromyalgia you have. I have had loads of blood tests ive had 3 mri bone scan head scan ive seen 6 specialists you name it ive had it. every test I had came back normal. I honestly thought I was loosing my marbels in 2013 I spent 7 months in bed unable to walk and very ill, and in 2014 spent auq to dec again unable to walk and had to have carers in and felt as if I was dieing. dr thought I might have ms. In the end she sent me to see a rheumatologist who told me I had fibromyalgia. this had been going on for 4 years. drs specialists rule out different things before you finally get an answear. I hope your dr send you to see a rheumatologist as they can tell if you have it or not. by testing you for pressure points, I had blood test to rule out other things and abone scan to rule rhumatoid arthritus. I finally diagnosed by the rhematolgist in march last year and was handed an information sheet by him and sent on my way gentle hugs take care sorry for any spelling mistakes having problems with brain function today 

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sorry blood test was to test for rumatoid arthritus, and I a bone scan my brain today is terrible I think Im due another brain scan hah its not working right today.

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I also saw a neurologist who ruled out anything was wrong their, sounds to me like it is fibro let me know how you go on take care 

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Hi Ela,

These things have all been happening to me for the last 2 years. All but the waddling gate. Please get a blood test to check your carnitine level. I found out I have a carnitine deficiency and taking the meds 'levocarnitine' 330mg 3 times per day, has changed my life! It is not very common in adults so most doctors don't even consider it!

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welcome Ela,

no need to apologise we all come on here for help and understanding as well as the odd laugh or two.

Please press your doctor for a rheumatology referral.  Fibro is different for everyone and is usually  diagnosed after everything else has been ruled out.  Sometimes you will have to be persistent and insist on the referral if your GP still refuses change doctors and find a more sympathetic one. usually younger doctors are more up to date with fibro. Low vit D will make you feel awful and make your muscles ache and cramp.  Try keeping a diary of symptoms it will help to take it with you if you ever get that referral. I always forget everything I want to say at appointments.  Learn to pace yourself and learn to say "no" to people when they suggest something you know you can't manage.  I have found changing my diet to healthy no gluten no refined sugars helped.  Medication did not help me as the side effects were too much but for others it works.  I use epsom salts in the bath and that helps as does gentle exercise and above all a postive mental attitude.  Positive romberg isn't unusual - I had it too. I can't stand and close my eyes which makes showering somewhat eventful as for tandem walking forget it unless I have a crash mat!  RA will show in blood tests.

Take time for yourself and  have some me time and remember there are lots of lovely fibro folk on here who know exactly where you are coming from. For me it took from the 80s until now to get a diagnosis.  I have to say the folk on here have kept me (reasonably) sane!

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Hi Ela,

I was diagnosed thus past October by a Lupus specialist at John's Hopkins in Baltimore, MD. Dr. Michelle Petri she's Awesome. She diagnosed me w/Fibro & Undifferentiated connective tissue. But did U have a positive ANA blood test or a lumbar puncture. Both of these test narrow it down... Talk w/your Dr. I would also be interested to C a MRI of your brain. I have 10+ brain lesions w/ deep white lesions ( which they say is seen in late 70s or 80s year old) & I am in my 50s & have been extremely active/ hyper all my life until this Bummer hit me...Ugh, but I am adjusting, but not being diagnosed puts a lot of stress of a person, which in turn causes your body to ho into Flares... Please talk w/ your Dr & push for these test...Its your health Not theirs !!

Throwing Blesses of success & keep us posted

Valerie826

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Hi Kaz 40,

Thanks for your reply, and gentle hugs.  I really need them today.

Yep, the brain function thing is a pain.  My post took me hours to type and my fingers hurt too. I'm waiting for blood test results from the Endo and my GP.  Will be interesting to see the difference between them, and how they are interpreted.  when I got my Vit D results back the levels were 35 - GP said it was normal. 

It's so nice to now, that there are people who have lived through the same as you who offer support.  Even if Fibro is ruled out, I will keep you informed.

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Hi megan1111,

Thanks for the tip, i'm feeling better knowing that no matter what the diagnosis is, there is a place where I can getsupport, and hopefully - because I am an optimist, be in a position to give support.

Thanks again

 

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Hi Maggers,

A crash mat would be handy. Despite feeling sorry for myself most of the time, My silly sense of humour comes out and keeps me going.  If my doctor is reluctant to refer me, I plan to change gp's.  In my reply to Kaz 40 I had Vit D results where the level was 35, my gp said it was normal and the Edno said it was low.  I am waiting for blood tests results from Gp and Endo - it will be interesting to see  

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Sorry Maggers,, pressed reply too soon - brain and fingers are not communicating. I've heard of Epsom salts, will give them a try.  Will keep you informed as to what is happening.

Thanks for kind words of support.

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Hi Valerie826,

I  just checked my paper work from my GP and the ANA is on  of the tests she ordered.  So it looks as though she's at least doing something right.  I'm afraid I have a bit of a chip on my shoulder when it comes to my gp practice, because of past experience when they put all my aches and pains down to depression.  When they see that on your notes, they tend to jump to conclusions. The MRI was a scan of my upper spine neck area. Not sure if my brain was scanned - I don't have much of a brain left to scan . Anyway, I will insist that i get a second opinion if I'm not happy with what she says (she's already commented that she doesn't think a rheumy referral is necessary)

It seems strange that many people in our position almost hope for a diagnosis just to prove that what we experience is not all in the head.

I'm not always on form and sometimes leave the doc's feeling deflated, but this forum has really helped me.  I'm in the UK and the NHS is great, but will go private if i get no joy.  I am in my 50's also, and when you get to our age, you know your own body better than any doctor does.

Thanks again for replying to my post.  I will keep you informed.

Love and Blessings x

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U got it Ela...your go is at least looking, but definitely would press to C a specialist & 4 sure they would want U to have a MRI & lumbar puncture... NO girl its surly not in ur head & ur body is definitely telling U ...Hey, there something Wrong!! Remember its your body & health & U R the one in Charge!!!!

I hope I helped, & please keep us posted. I just found this forum a few days ago, so we R both new... Everyone is so caring & supportive. Its just to bad we R all over the place. It would be nice to connect face to face...

Well girl...U R alone !!!

Smiles & Giggles will get U throw

Valerie826

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Hi Ela, I find Epsom salts in a hot bath helpful. I have also been tested for Vit D deficiency. My level was 20, which prompted my GP to phone and tell me, and he did a script for an immediate 'booster dose' and then a daily dose to continue with. He told me the level should be 70. I did start to feel better after about a month. I would also advise you to push to have a Rheumatology referral, as most people do seem to get a proper diagnosis from there. We are all here on this forum to listen, and advise where we can. Good Luck. xx

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Hi Ela,

all this sounds so familiar. I'm so glad we have this site for help and support. Best of luck, Jem xx

 

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Hi Ela, I have just recently joined this site and I feel less lonely, being trapped in this horrible condition. Everyone is so supportive and perversely it helps to know there are people out there experiencing similar symptoms to you.

 I have over the last year gone through all you are going through right now. I had so many tests with so many doctors, the only thing wrong they could find was B 12 deficiency and a positive ANA but but not the markers for lupus or any rheumatic condition.

It was only when I went to a pain clinic that I received the whole coordinated treatment that I needed. 

I do wish you luck and hope that you will get a proper diagnosis and the help you clearly need.

Meg

  🌺

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Hi jeanne 8532,

Thanks for such a lovely - reasurring reply.  I woke up this morning to messagaes in my inbox and got quite emotional. You guys on here have REALLY made a difference on my 'outlook' on the way forward.  At times I have wanted to give up trying to find out whats going on with my body, because of all the 'within the normal range' blood tests, and the negative scan results. I knew it wasn't in my head, but started to feel defeated. I had just started to feel comfortable with a GP who has now left the practice. This new GP, who doesn't really know me very well,  has also told me that, if she had to refer me to a Rheumatologist it would be a local one and not ( at the hospital where I requested to see neurologis, because of its good reputation).

This forum has helped me to become focussed and determined to out my foot down and ask for a Rheumatologist referral.

Thanks again I will keep you updated.

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Hi Jemini,

Thank you so much for your good wishes - I really appreciate everyone taking time to  give support and advice.  Will let you know how things go.

xx

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Hi Meg53,

It's was so nice waking up to the suppotive messages from lovely people on this Forum.  I am waiting for blood test results for Rheumatic makers and ANA etc.  I was just wondering, if they ocme back negative, what my next step should be.  I KNOW something isn't Are you in the UK? Do you need a GP referral for the pain clinic?

Thanks again for your kind words of support and encouragement.

Ela xx

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Hi valerie it would be great if we could all meet up, but being all over the place unfortunatly we cant but at least we can help and surport each other. Im so thankful I found this site on sunday of last week. I was in dispair on sunday and had really had enough. but all the girls on here have been great with advice but most importantly surport. excuse any spelling mistakes brainfunction not great today haha. take care gentle hug coming your way.