What were your first symptoms of fibro?/Initial reasoning you saw doc? 99% sure I may have it.

[SultryEyes71281]

For years and years, I have seen my Dr with the same symptoms over and over. BUT I'm thinking that maybe he didn't put two and two together BC a lot of the visits were separate for each symptom. I would go and complain about the aches all over my body, or how my face is numb on one side, about the numbing in arms, fingers, down legs, or my IBS (which I've had for 15 years) or about my attention issues, forgetfulness, foggy head, hair falling out all a sudden in clumps, neck issues, always tired and no energy, feel like I have bruises all over body but nothing in that spot, ankles kill at times and swell and then go away after elevating legs a few days, Migraines are unbearable and my back of head and top of head actually swell and I cannot touch it nor sleep on it. I have to sleep on side of body and in the side that has no swelling. . etc. Some of these symptoms I've had for quite some time, some were new...but for the last 5 months I'd say.. none have gone away and are always there. Some days are worse than others, some better. I've gotten blood work done. Normal. Gotten sonograms on body parts. Normal and no clots etc. MRI's show a few buldging discs in back and neck area (I had trauma to neck head and spine two years ago due to ex husband almost killing me, leaving me w chronic pain) . Neurologist says no tumors and swelling is from the trauma and pain I'm in with my neck. Almost all symptoms resemble MS but tests came back negative. Saw pain mgmt Dr months ago and he gave me tramadol and meloxicam, stating rheumatoid arthritis (mind you that when I saw him...it was just for neck head and spine. My symptoms weren't as bad as have been past few months and I didn't even know about fibro, never heard of it at that time). I have a friend who is a nurse and when I told her what's been going on, she said it sounded like fibro.

I am thinking of going back and mentioning this. Pain mgnt doc never tested for this , doing the pain points on body. He was only focusing on the pain from my ex husband beating living sh*t out of me.

Also, my periods every month have gotten Insane. I was never someone who suffered from pms or the cramping and aching and moodiness. Now, the last 5 months have been unbearable. I actually get contraction-like pain as I had when I was in labor. And the pain is increasing each month. I also have really heavy clotting which I never had before (except after birth) . Do people w fibro tend to have endometreosis as well and vise versa??? Or are periods like this the norm for people w fibro??

All people w fibro and even endo too...please share your thoughts and info. With your history amd knowledge of this chronic pain, do you feel it's fibro ?? Were these like your symptoms? All help needed and appreciated. Thanks (live in NY)

[TheAuthor]

Hi SultryEyes71281

I can only give you my perspective on this from a male stance but hopefully it will help a little. I started with really bad migraines and knee joint pains about 20 years ago when I was 30 (am 50 now). Thought nothing of it and had them treated as separate conditions by doctors. All through my life I have had respiratory problems as I have chronic asthma and COPD which I do not believe to be associated with fibromyalgia.

Just over a year ago when I was 49 I started to suffer the most horrendous back, right hip, and shoulder blade pains. (Pain came on almost overnight). This was quickly followed by rib pains. I went to see my GP who sent me to a chiropractor for all the pain except my rib pain. This was because I had developed a lump the size of a tennis ball that protruded out of my stomach. She told me that the lump was my stomach coming apart and separating. (Have looked on internet and this appears to be a post pregnancy issue - really weird). Anyway, my chiropractor said that I had fybromyalgia and that all the pain was related to this and he would advise my GP.

My GP then prescribed nortryptaline for the pain. This is as far as I have got with this as I am still fairly new to the whole world of fybromyalgia. It's early days on whether the medication is working especially since I had a really bad fall yesterday and have now shattered my disc on the right side! The joys of life.

Hope that's okay for you and that you get your issues sorted.

On a matter of interest, my wife has primary progressive ms and her symptoms are very similar to mine, It is really odd that it should be this way. She had her MRI and her myelin was badly damaged with two large brain lesions.

Al my hopes and dreams for you

Ken (the author).

[phlebo123]

Hi and welcome!!

I would suggest that you make an appointment with your doctor and take the list you have written above with you to show him/her ( that way you won't forget to mention anything) Ask if you can be referred to a Rheumatologist to get a diagnosis, if your doctor has little or no experience of fibromyalgia.

A lot of your symptoms are similar to mine:

IBS for over 30 years

Dreadful painful periods (like you mention cramps like labour pains and heavy bleeding)) I am so relieved that I am now post menopausal!!

Pins and needles, strange tingling

Tiredness and foggy moments... wrong words coming out, forgetting words and names

Neck, shoulder and feet pain

If you look on the fibroaction website ( fibroaction.org) you will find a full list of symptoms.

If you have any other questions ... then don't be afraid to ask "us"... we are here to support each other.

Take care xxx ( I live in Scotland)

[Hidden]

Hi sultry eyes you sound like you're going through a rough time of it welcome to the site you have come to the right place for fibro advice we're a friendly bunch that you can ask anything there's always someone kicking around We take the serious things seriously and the fun things fun

My first suggestion is have a cuppa, put your feet up and try to relax

Next, yes, go and speak to your GP about it as he/she may not have thought about it being a possibility. Mine hadn't until I suggested it. I agree with phlebo with respect to taking a list with you stating everything above so your doc can understand your problems better in order to try and help you.

Okay, I also suggest that you click on the link in phlebo's reply or on the butterfly on the top right of your screen as they'll both take you to our mother site FibroAction where there is a wealth of up to date information connected to all things fibro.

Many of us here have been tested for this and that before getting a diagnosis and have first hand experience of what you're going through so please don't feel alone with this.

I hope things ease up for you soon and here's some soft fluffie cuddles for you

xxxzebxxx

[Gramma]

How awful and frustrating for you. Apart from this site which is brilliant, check out

patient.co.uk

It's the site my GP uses for basic reference.

[sue32]

I was diagnosed cos my hands were swollen and painful. But since then - 2005 - my fibro has got so much worse. Pins and needles, 'crawling insect' feelings, pain in all the areas fibromites get, fibro fog - often - tiredness, practically all the time. XX

[TheAuthor in reply to sue32]

Hi sue 32

Really interested in your reply to sultryeyes. I never mentioned the pins and needles as wasn't sure if they were fibro related? I have terrible time with this in hands and feet. I also get a sensation that something is crawling under the skin on my face! Is this the same as yours?

Many thanks

Ken (the author) x

[anbuma in reply to TheAuthor]

hi I was diagnosed with fibro in 2005 and one symptom i had then was like ants crawling under my skin.

[sue32 in reply to TheAuthor]

Yep!! I get this 'creepy crawly' feeling in my legs and on my face and sometimes in my arms; like there are ants or a spider crawling on me. In fact, it can be anywhere on my body!! It's so bad sometimes I'm convinced that there really is something crawling on me! I believe the pins and needles can be due to fibro, as can a lot of symptoms. It's an awful affliction but trying to explain it to people is difficult. Do you find this?? X

[TheAuthor in reply to sue32]

Hi sue32

Thank you so much for that. I wasn't sure if it was just something else so never told my doctor about it. I will sit watching the TV and start moving or pulling on my hair as it really feels like something is there, mostly under the skin. Wasn't sure if anyone would take it seriously or not.

Thank you.

Ken x

[sue32 in reply to TheAuthor]

I have told my GP off all the problems I have, and asked her was it due to fibro? She just says yes!! I've yet to find a really good pain killer to help with this awful pain. As I'm on a lot of meds for other things, I can't take the usual meds for fibro as they don't mix! So I'm at a bit of a loose end.....taking paracetamol, then codeine, then tramadol!!! XX

[TheAuthor in reply to sue32]

Hi Sue32

I am so sorry to hear about your problems with the medication. I have a lot of interactions due to so many meds so my doctor has given me metrocloperamide which combats any nausea I get. Its not brilliant but its better than the alternative. Hope things get sorted for you.

All my hopes and dreams

Ken (the author) xx

[sue32 in reply to TheAuthor]

I take that too. I have problems in the mornings when I get up. I have terrible nausea and retch every morning. Apparently it's something to do with my diabetes..............X

[Sarah-Jane]

Hi all, as has been stated, when visiting your doctor etc, take a list of everything that's going on with your body, from the top of your head to your toes, day and night. Unless you are medically trained, and sometimes even if you are, joining the dots is impossible without all of this information. My doctor was really pleased. He found it really helpful. I felt like a hypochrondriac but he said no, its really helpful.

I also find I forget what was wrong, when and how long for. I go onto PatientsLikeMe.com and record all my own details. Its a site which can be accessed by the medical profession, minus your personal information. I have charts following my ups and downs and I can, if I wish, follow others with one or more of the same conditions - so not just FM. You can then print these off. I would love to see something similar here.

Soft hugs

[Nook67]

Hi, I have alot of the symptoms mentioned and the tender points. I mentioned it to my Dr about a year ago and he suggested I was too young to have fibro (even though I know 2 people my age who have been diagnosed with it). I have had tests for other things eg. thyroid, coeliac, RA, etc. all negative. I am going to see him again next week as my right elbow is really painful (thinking Tennis elbow but could it be part of the fibro?). I was told January my stomach problems are likely to be IBS so have colofac tablets to take as and when I need them. How do I get the Dr to investigate fibro Very frustrated