Could it be Fibromyalgia???

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.

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.

hi ela, i was diagnosed about year n a half ago nearly but didnt start getting help really till last year. i am 32 and i have been in agony for probably 10 years. i worked in retail from 16 until a few years ago when i was really struggling. Please read my discusssion its fibro with swollen hands if you want to hear me go on with myself. I understand what you must be going through i was going out my mind back and forth the doctors,hospital etc...and days in bed and on the setteei still have days now where i cant get out of bed on a bad day. This to me how your explaining it to us sounds like fibro as when i read your discussion it looked like my diary. I have only just started speaking on here as i dont usually do this but i just felt isolated as sometimes its like even the professionals dont understand i have changed medications multiple times now as i had side effects. I eventually was sent to reumotology and examined and they scored me 12 points and ran blood tests he came back with conclusion finally after so many years of not knowing that i have it. Please do not give up keep going to your gp and if your really bad go the hospital ask them if you can be refered to be checked for points. Hope you get sorted soon. all best.

Hi Melissa30395,

Thank you for the supportive message.  

10 years is a long time to be in such pain and not have any answers.  its been probably 5 years since things have slowly crept up on me - I am coming to terms with how much i've changed have been forced to accept that I'm not  superwoman anymore.

Reading all the posts about the problems others have faced getting a diagnosis, has been really helpful and emotional at the same time.

I really relate to eveything being said on this forum and think it's sad that in this day of modern medicine, we still have to fight to make ourselves heard.  

Although I am a sensitive person at heart, I can be very strong when the going gets tough.  This week has been great, because being on this forum has given me the strength to keep pushing for an answer.

I really appreciate everyone taking time out to answer my post, 

Love and Blessings x

 

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

 

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  

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.

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

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

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

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.

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. 

You definitly need to see a rheumatologist hun they are the 1s that diagnose the fibromyalgia. like you I was dispairing in 2013 in the december I neurologist specialist I had loads of tests done. when I went back to see him for the results he said sorry I cant help you everything has come back normal. I felt so low I was absolutley distraught I said to my husband whats wrong with me. I thought it was all in my head and I was going mad. I went back to the gp. she refered me to the rheumatologist. he did a pressure point test on different parts of my body more blood test for the millionth time bone scan. theirs different conditions they have to rule out 1st before they say it is fibro you have. your gp should refer you to a pain clinic. my gp has tried me on all sorts of tablets ive reacted badly to all of them so pain relief for me is a hot water bottle and ibuprofen.and grit my teeth haha. 4 years it took for me to get diagnosed, I saw different specialists and lost count of the many blood tests tets mri ct scans then finally told it was fibro. take care gentle hugs  

please excuse any missing words or spelling mistakes my brain function not great at the min the joy of having fibro roll on friday going  away for a weeks hol to the sea side yippee

Good for you Ela! And you are welcome. Sometimes we need to be a little more assertive in our dealings with doctors, and it's surprising how often it works. So glad you have found this forum helpful. Gentle hugs, Jeanne. xx

4 years omg, I feel for you. It sounds as if you really went through it.  It takes a person who has walked a mile in your shoes (or in my case, a couple of yards) to really understand what you're going through.

I will make sure I get a rheumy referral.  From her comments last week, I fully expect my GP to be a pain. So I am gearing up it.  I'll try not to stress myself out. i do feel better since receiving such great feddback to my post. Thanks again.

Love and blessings xx

You may be able to find a local support group Kaz. I know there is one where I live, in Eastbourne. You could google it perhaps. xx

Hi jeanne their is 1 by me I have been on their sight, but from what I read from 1 of their posts, some bitching had been going on between some of them, and that I can do with out. I thought surport groups were surpose to be to help each other sad when is like that.ladies on here are so much nicer and very surportive which it is how it should be. take care hun gentle hugs xx 

Hi Kaz :

We girls R always here...always remember that !! Whether U R have a good or bad day, we all want to either celebrate your victory or help you through the Not so good one...

Hang in & Many Blessings,

Smiles & Giggles,

Valerie826

Oh that's a shame! Well you know we are a different sort of ladies here! Jeanne xx

Hi ela I agree with you we know our bodies better than any dr. before I got diagnosed with fibro which took 4 years to diagnose. I saw no end of specialists had that many tests I lost count. as for blood tests I felt like a pin cushion. with all tests coming back normal my gp refered me to a rheumatologist..  before he would say it was fibro for definite. I had to have more bloods to rule out rhumatoid arthritus, I had a bone scan. the rhumatologist did a pressure point test, which I had 18 out of 18 pressure points. when the results came back I was low in vitamin d. he then told me it was fibro I had he gave me a leaflet about fibromyalgia and that was it. back to the gp for help with pain relief. the rhumatologist is the person who you see to get a diagnosis for fibro. Im shocked that your gp wouldnt refer you to see  a rhumatologist you definitly need to see  one to get a proper diagnosis. I would insist on seeing one once all avenues have been exhausted. take care gentle hugs

Hi jeanne it was rheumotologist that dianosed me I was also low in vitamin d and had to take vitamin tablets for a while to help bring reading up. we are all in this togeather we will do all we can to help support each other.take care gentle hugs

Hi valeria

i hope you dont mind me asking with Lupus what kind of symtoms do you have? im only asking because i have been diagnosed with fibro and i have multiple symptoms but lately i have had swelling of the face and last week my legs started swelling. I went the doctors and she said it was fluid and i had to stay off my feet to see if it goes down she also gave me tubes which i have been using but to be honest it has got worse it has now spread up my legs so i have to back to the doctors for her to run more tests. I have notes of the hospital from last year tho which says i may need to be tested further if selling gets worse. I tried to look through the internet and i came across Lupus and it describes swelling of the tissue and i have just noticed your post so i thought i would ask you. i hope you dont mind? i am already on naproxen ad have been for over a year as my hands also swell up.

all best

melissa

Hi ela808 how are you doing has your gp refered you to see a rheumatologist yet. hope she does refer you I had loads of tests blood tests done before my gp sent me to see a rheumatologist it took from 2994 to 2014 to get the diagnoses. what a relief it was when I finally got a diagnoses. take care gentle hugs x

Hi Kaz 40,

Thank you for asking.  I have an appointment with my GP on this Thursday.  I'm not looking forward to it, because she of what she said before my blood tests, which, as far as I can make our are alll the rheumy type conditions. When I rang the surgey, I was told they have all come back normal.  However, the blood tests from the Endo shows that I am very low in iron (which has not showed up in previous blood tests).

I don't think my iron levels are the main reason why I feel this way.  I have have low iron on and off for most of my life.  And I've always taken floradix, because iron tabs make me constipated.

I have just spent the last 3 days in bed  - I felt slightly better on Friday, took the stronger does of painkillers -  walked to my local tescos, prepared the eveing meal, prepared fruit for smoothies and did a load of washing. Saturday and Sunday, I felt awful, my fingers had seized up, I had shooting pains in my feet and legs, my arms felt like lead and I had excrutiating pain in my neck and lower back. 

Whatever I have, I need answers,I am ready to take on my G Despite my physical and mental exhaustion, I still have an inner strength. Rant over - my fingers hurt from all the typing, but it feels good to express how I feel.

Thank you for your support, I will keep you updated,

Lo e and Blessing x 

Sorry for typos - brain and fingers not cooperating. x

I know that feeling very well., Im trying to get my brain into gear this morning its not working great this morning, my fingers are very painful this morning. great start to the week x

I can understand you not wanting to see your gp, is their another 1 you could see. My gp sent me for all different tests and I saw different specialists before she sent me to see a rheumatologist. he did tests to rule out rhumatoid arthritus the test for that came back normal the blood test he asked for showed I was low in vitamin d. he did a pressure point test on different parts of my body their are 18 in total. I got the full 18. when I went back to see him he said its fibromyalgia youve got and said go back to your gp for pain relief and that was that basically thats what wrong with you get on with it. keep pressing for answears thats what I had to do it was doing my head in, all I wanted was a diagnoses as to what was going on with me. every test I had just kept coming back normal. I thought I was going mad. MS ME and fibro have more or less of the same symptoms ME is associated with fatique which you have definitly got my because Im exhausted all the time my gp told me you have ME also. the symptoms of ms and fibro go hand in hand except fibro is ore associated with pain where as MS isnt. your gp should be listening to you and ruleing other conditions out then as a last resort which was the case with me. she refered me to see a rheumatologist after more tests ugh I finally got a diagnoses after 10 years. my gp thought at first I had MS. Has she refered you to rheumatologist cant remeber if you said you had seen 1. fibro fog a nightmare today Im getting so frustrated with it all. its a rheumatologist that you need to see for a diagnoses tell your gp you just cant take more. gentlle hugs thinking of you x remeber to pace yourself or you will pay the price if you dont take care

10 Years - my goodness, that's awful.  My symptoms have been going on for about 6 years.  First all my symptoms were attributed to pre-menopause.  I did the checklist and had all the symptoms with Fibroids, severe PMS. Had Hysterectomy last year and thought I could start living properly again.  When the symptoms persisted (apart from the monthly woes, thank goodness), I knew there was something else going on.  My GP practice is very large and the GP I had during my meno problems has now left.  I've tried at least 4 different GP's from the same practice and haven't found one l feel comfortable with.  This GP hasn't referred me yet, I will ask her outright if it's not arthritis then could it be fibromyalgia.  I understand Fibro symptoms are similar to alot of other medical conditions.  I have done so much research and ruled out many things. To me, I feel I have Fibro, I even asked my daughter to do the pressure points for me. I have the following tender points.

1. both sides of my lower back.

2. both shoulder blades

3. arms near elbows

4. inside legs near knees

5. back and front of neck

6. just below collar bone

7. upper chest

I also have the following symptoms

 -  hip pain

 -  foot pain

 -  itchy, tender scalp

 -  itchy face

 -  itchy arms

-  tight jaw

 - hands very red in the morning

  - foggy thinking

 -  anxious

-  sensivity to light, sound and crowds

- sensitive digestivge system

and many more...

If it's not Fibro, then my GP should be doing everything she can to find out what it is. You're right - I just can't take anymore. I will ask for a rheumatology referral and not one of her choosing but one that is an expert in Fibromyalgia. Even if it is ruled out, I can then look elsewhere.

thanks again for your support, hope you have a restful week.

Ela808

 

I think its definitly fibromyalgia with what youve told me and where your tender points are. is their a different surjury you could use your gps sound useless to me. what my gp did with me bearing in mind it took ten years to diagnose.I saw ling specialist heart specialist neurologists back specialist just to name a few mri scans brain scan they could find my brain haha ct scan you name it I had it. I had 3 years of having 6 months and more where I was in bed unable to move slured speech very ill my dr had to get carers in to look after me she came out to see me every other day I was that ill to be honest I thought I was dieing. in the end my gp refered me to a rhematologist. he sent me for a bone scan to rule out rhumatoid arthritus I had more bloods done that showed low vitamin d he did a pressure point test on different parts of my body their are 18 in total I got the full 18. when he had all the test results I was called back to see him he said you have fibromyalgia, go back to your gp for pain relief and that was it, havnt seen him since. other conditions need to be ruled out and tests blood tests done. if they are come back normal then your gp should most definitly refer you to see a rheumatologist as they are the people that diaagnose fibro tell her youve had enough you cant take no more would she refer you to see a rheumatologist thats the only way you will et to know if it is fibro by seeing a rhematologist. My dr thought I had MS at first as MS symptoms and fibro symptoms are the same except fibro is more pain based than MS.But I think its fibro you have hope you do get some where when you see your dr let me know how it goes take care gentle hugs kaz