A few years ago symptoms built up ticking many of the Sjogern's syndrome boxes, but the test proved negative. Then followed severe bilateral frozen shoulders lasting 7+ months, Now the hips have the same symptoms. The GP thought possible Polymyalgia Rheumatica, but tests for this also proved negative. Disheartened, and with increasing immobility with pain extending to most parts, especially sore muscles in arms legs and low back, am now wondering if this could all be related to FM? The more I research FM, the more likely it seems as just about every symptom I have is mentioned. Am loath to keep pestering the GP, but although Ibuprofen help to ease the soreness a little, things seem to be getting worse. Will see the GP again of course, but would appreciate any helpful comments. Thanks
Ask your GP for a referral to Rheumatologist as they are the people who usually diagnose fibro. It is not a quick diagnosis but made when everything else has been ruled out. To ease pain most fibro folk use epsom salts in a bath - you may find this helps. Have you had your vit D checked as low vit D is responsible for muscle cramps, pains and general aches. You definitely need to return to your GP - that's what they are there for, never feel a nuisance, if it matters to you then it should matter to your GP. There will be a few other fibro folk along to give their take soon. take care and keep us posted.
Might be worth phoning the surgery and asking whether a vit D test was done as it is so often overlooked. Never suffer in silence there are some lovely folk on these boards only to willing to offer a shoulder/gentle hug/advice etc or even share a joke or two with. Don't know what I would do without them all.
I really sympathise Chickabee. I've being having a build up of symptoms over the last couple of years and every time I see a doctor, I get a different opinion as to possible cause and various meds prescribed which havent helped much. The appointment before last the GP mentioned poss fibromyalgia and organised a whole bunch of blood tests. At the latest appointment to get results, all tests apparently came back 'normal' (whatever that means) and no more mention of fibro. She proffered it might be the onset of further arthritis but I already have OA in one or two joints and I know the pain is different plus all the other subsidiary symptoms like brain fog and exhaustion etc. I told her it wasnt arthritis pain, its very different and this pain is not in the joints but rather the muscles. She wanted to refer me only to the 'memory clinic' but I insisted I dont have memory problems, I have trouble focussing as though my mind cant cope with focus on the pain and then trying to think clearly on anything else so now she's referred me for a neurologist appointment.
I take anti inflamms (ibuprofen at first but now naproxen) for the OA but they dont do anything for the fibro type pain as its not really an inflammatory pain. I take paracetamol which helps a little but not enough and I dont want to increase the dose for fear of other damage. As Maggers has said Epsom salts (magnesium) in the bath do help a lot. My doctor also mentioned gabapentin but didnt actually prescribe it, so I'm at a loss really to determine what may help. I also go to meditation classes, which help me relax and clear the mind and try to focus away from the pain - they do help a little but the benefits dont last long. Sore muscles in arms and legs is one of the prime symptoms of fibro, along with patches of numbness, leaden limbs, inability to focus the mind, chronic fatigue and a whole range of other minor subsidiary stuff. My GP practice obviously doesn't favour a diagnosis of FM and I rather feel they're looking at placating me with options for treating individual symptoms instead of finding the root cause and treating that accordingly. Good luck with your doctor, do keep pushing for them to understand the whole picture re your problems and not just focus on one symptom, ie pain, and only get fobbed off with over the counter anti inflamms etc.
I so appreciate all the lovely people on here willing to give guidance, advice and just moral support. I hadn't even heard of fibromyalgia and for years have just been totally in the dark and a bit lost to be honest. As much as its hateful to have the symptoms of this vile syndrome, I at least now have comfort in others who can share what I'm going through. Thank you all so very much - I was really at the end of my tether before finding this support network.
Thank you so much Loxie for your helpful reply. I guess dispair is on the cards if even the medics can't get it right. Have to say the youngest Dr seemed to be more intersted than the older Drs, but then FM has only been recognised for a short period of time, so no surprise older Drs have little knowledge of it. My main frustration with the system is that Drs don't seem to check up one's previous complaints that might give them a whole new overview of the problem. Will now ask for a Rheumatoloy referral,..more hope there maybe!
Thank goodness for technology otherwise we would all be sitting alone and completely unaware that others could help us and us them. Let's face it even if we met someone with fibro we wouldn't necessarily know! Community even virtual community is so important for our general wellbeing.
Hi Chickbee: Ur symptoms definitely sound like Fibro, so do keep pushing your GP. Also pusy your GP for a referral to a RA specialist. I just got my diagnosis last October. You have to be on top of your health cuz you know your body so much better then your doctor.
I completely agree with what everyone else here is saying. It's tough getting the diagnosis and your right getting to the root cause is much more beneficial than chasing the symptoms. You really have to push for that rheumatology referral and I also found getting referred to a pain clinic very useful. Like you I have other conditions that overlap and made diagnosis difficult including OA in my spine and both hips. It also seems like everybody has been vit D deficient too so well worth getting that checked.
Hi The rhumatologist diagnosed my fibromyalgia by doing test to rule out rhumatoild arthritus, he did a pressure point test their are 18 pressure points I got the full 18 he sent me for a bone scan and blood test. I had low vitamin d. he diagnosed fibro then it was back to the drs for pain meds research fibro as much as you can. the rheumotologist is normally the person that diagnoses fibro once all other conditions are ruled out. it took from2004 to 2014 for me to finally get diagnosed take care gentle hugs
Well, thank you Kas. Info is tumbling into my inbox from some lovely people out there...which has really lifted my spirits. There is a lot to think about and plans to make along the route to enlightenment. The fact there is no apparent cure is disappointing, but oodles of things to try to improve life. Always good to have direction and
I wish their was a cure for us, its trial error on so many things its finding things that we can take or use to help us as much as we can. I have different aids walking stick walking frame I know have to use a wheel chair I cant walk any where mobility has got worse. research fibro as much as you can get as much help support as you can from your gp. also see if theirs a fibro support group in your area. its take each day as it comes 1 thing we all have to do is learn to pace our selves on everything we do.having fibro is a learning curve for us all on this forum we support each other and advise each other as we are all in this togeather and we know how each other is feeling takecare gentle hugs
I started to become ill in 2004, with different symptoms. I saw loads of different specialists I lost count of the different tests I had blood tests ct scans mri lung tests heart tests every test I had came back negative. it was demoralizing and frustrating I got to the point where I had simply had enough. all I wanted was a diagnoses as to what was wrong with me.my dr sent me to see a rhumatologist in 2014 he sent me for a bone scan more blood tests he did a pressure point test on different parts of my body after all the tests came back he told me I had fibromyalgia with a low vitamin d count he gave me a leaflet on fibro and sent me back to my gp for pain meds.A rheumotolgist is the person you need to see for him or her to diagnose fibromyalgia your gp should refer you to see 1 which normally they tend to do if other tests you have had have come back normal. you need to have a chat to your gp. take care hope she will refer you to rheum and you soon get some answears. take care let us know how you go on
Hi chickabee; sorry to have taken so long to put in "my bit".....I totally agree with all the advice re "getting that Rhuemstologist appt ASAP"....perhaps, as you have already been to the Symptom Checker, I feel it may help if you print off the sheet with the symptoms on it, and put A Tick beside the ones that you feel are appropriate to you.....I would also ask the Rhuemy to have bloods done for Thyroid, as one lady has advised me, that "although the results normally come back within Normal Range" (mine came back Border-line), some latest research have found that we have a deficiency in the T3T4 uptake, and with taking a small dose of Thyroxin can help our energy levels, and doesn't do our body any harm.....also if you can convince Rhuemy to order a scan on your Thyroid, there is a possibility of the Thyroid showing a reduction in size. Also ask for Vit D, B12 and Iron for their levels.....these are all necessary for the cynthesis of energy in our cells.... I guess the 1st step is getting that referral....and as you may have probably already noted, many of us also have other health issues (a lot have Arthrites in some/many joints, and I feel that the Medical Profession feel that we are "suffering from depression", secondary to the pain related to either this/other condition)....this is inappropriate, as many of us say, the feelings of being depressed are usually only from "knowing" there is something else wrong, and not being able to get the answers that we are looking for.....you will also probably find that along with the Fibro, there will be the CFS/ME....and yes, as we all have symptoms that "appear as Neurological", often the professionals will have to rule out other conditions like MS/Muscular Dystrophy etc..take this all as "part of the diagnosis process"........but always remember that we know and believe you, and it will be important for your family and friends to understand/know what/how you are feeling, for their support is also important.....another treatment that I find very beneficial, along with other's suggestions, is Physio regularly, and the one drug that many of us find that helps with the Fibro Pain (the burning/nerve pain) is Amitriptylline....you may like to trial this, and see if it helps you? There are others who feel they prefer to "go Natural Therapies", and this is also a personal choice, and I have also made use of a Psychologist, as research has also shown that Fibro seems to affect certain types of personalities, and if the sufferer has had a traumatic life/event in the past. However, if you do need relief when the pain gets too much, please don't hesitate, as from my years of Trial and Error, this is the one medicine that keeps me going.........hopefully not too long a blog??? we will alll be here with you through your journey, so please keep us informed.................Bron