New and confused
Posted , 4 users are following.
Hi in dec 08 I was diagnosed with fibromyalgia and have had several opinions from different Health Professionals I have come across through the referral and consultation phase, that I am VERY VERY confused about - if anyone had any thoughts?
I was orginally referred to the hospital consultant with a GP diagnosis of throchanteric bursitis (inflammation of the bursa sacs inbetween the hip joints) and because I am asthmatic my GP wouldn't prescribe anti-inflammatories so referred me to the rhumatology dept for a steroid injection straight into the joints. All the blood test came back negative, apart from showing I am low on folate which could cause anaemia if left (which GP said would prob have been reason for feeling tired/lethargic).
At the 1 and only consultation at rhumatology dept they asked brief (very brief) history of the pain in my hips/thighs, did the point pressing test, asked how my sleep was and then told me it was fibromyalgia, gave me a nice bonny leaflet to read, told me there was no further help and prescribed me amitriptyline.
Whilst waiting for this consultation I had asked about physio and since diagnosis I have asked the 2 different physios their thoughts also on fibromyalgia. The 1st physio felt that my hip pain was because the smaller muscles in my legs and hips were doing all the work of the large buttock muscles, as these weren't firing when they should when I walked etc. The 2nd physio felt that my stature was that of a pregnant lady with my pelvis dropped forward and stomach drooping, which he said since my daughter was born by C-section 5 yrs ago would make sense as the stomach muscles would have been stretched by pregnancy then cut by C-section so be weak and cause my pelvis to roll forward, my hips to be out of realignment and subsequently my knees, ankles and feet to be the same - all possibly causing the pain in my hips and legs.
So I am left feeling quite shocked and confused that a quick referral and 1 consultation can say I have fibromylgia that I will have forever, of which there is no cause or reason for and that's that. To 2 different physios giving me VERY plausible and logical reasons why I have this hip and leg pain. I also discussed with the physios their thoughts on fibromyalgia and they felt very much the same as me that it feels like an excuse - (i) an excuse by Dr's who can't be bothered to find the real reason for peoples very real pain and discomfort so invented the word fibromyalgia for all those patients that they see regularly that they then don't have to help anymore, by passing over treatment to the patients and (ii) it feels like an excuse for some patients to actually say they have some kind of illness if they're tired or aching that day.
I don't mean for any of this to purposesly upset anyone, I'm just trying to get answers so I'm not confused about all the different thoughts of different health professionals.
When I read the bonny leaflet the consultant gave me, the symptoms were familiar to me with regards to fibromyalgia i.e. the disturbed sleep (although we've had a horribly stressful 2 yrs as a family and have had none stop upsetting events one after the other without being able to deal with the previous event, so presumed this stress was cause of sleep disturbance), IBS, feeling tired all the time (although I am overweight so just have accepted over the years that I will feel tired until I get my finger out to lose weight) etc. But I have had a plausible reason (as above) for each of these symptoms and as my husband rightly pointed out, the symptoms in the leaflet were very broad and covered almost everything and could be stated for symptoms of a lot of other medical problems too, as quite general.
Again I want to reiterate here that I'm not trying to be rude to anyone about this illness, I'm just trying to outline my struggle with accepting the consultants diagnosis after 1 consultation and trying to find answers to whether (i) this illness actually does exist and its not just a Dr's excuse for not trying anymore to help patients where test results all come back negtaive (ii) that I do infact have this illness without any other plausible diagnosis being considered for anything else or without a reason and (iii) do the physios have a point about why I have the discomfort i.e. muscles not working properly and possible results of a C-section delivery?
ANY information and thoughts from anyone would be greatly GREATLY appreciated, so I can move away from the no mans land I feel in at the minute.
MANY thanks
Em 
0 likes, 4 replies
SES
Posted
I started with my fibromyalgia and OA after I had my 3rd child at 33 and to be honest I havent been the same since!!!! I had pubis dysfunction whilst I was pregnant and I had clicky hips when born and I had numerous referrals to so called professionals which to the top and bottom of it said I was over weight and had mechanical backstrain!!!! since having x-rays the OA showed up in my spine and hips..... due to my c-section I had my baby awake with a epidural and they missed the cavity in my spine due to the OA and I can recall I had like a nasty electric shock due to the needle and to this is how I predict my central nervous system/fibro started!!!!!
I finally got my diagnosis from a pain Consultant whom said I have 18/18 tender points which in actual fact means more or less I have pain from head to toe, you have to have at least 13 out of 18 for a diagnosis :twisted: and after at least more than 3 months of pain and fatigue........ with fibro it can appear any part of your body at any one time so one day I could have the pain in my big toe and another day I could have pain in my hands...... consultants/ doctors normaly do blood test to rule out other ailmets like Rhuematoid arthrits etc and once nothing has come back in the blood work then the Fibromyalgia is the result ..... including the tenderpoints!
I was so relieved when I had my diagnosis as I felt I was banging my head against the wall and so since it took me so log to get the recognition I decided to set up a Support group for fellow sufferers and so I contacted [b:75b1c3c662] http://www.fibromyalgia-associationuk.org/ [/b:75b1c3c662]
Please do feel free into chatting here as we all are friendly, there is Tess,Di, Linda, Lindy, Helen, and many more that pop into our forums..... if you register yourself on the website you can instant message members ........ I do hope you are having a better day today when you are reading this xx Take care and I hope 2009 is a good year for you!!!
dianepaterson
Posted
Hi am Di and like u spud was very confused about how i was feeling and like u didnt know if it was fibro cause it was a doc at my surgery that first thought it could be that as all blood test came back clear... after a visit in sept 08 to the rhymatolidgy dept and after doing the pressure points which when she touched them it was very uncomfortable and infact when she poked my top right thigh i just about jumped through the roof.Accepting that something is wrong with u is very difficult but after reading many web sites on fibro it was like reading about myself... and if im right i think most people on here feel the same.. If u feel u have not got fibromyalgia then u are going to have to fight to find out what is wrong but.... if u have even a few symptoms and the pressure points it could be fibro so try and read up on it more.. i have sore hips/knees with OA and burtitis in my left arm but.. i also have all the other symtoms of fibro... come on here and ask us questions and im sure the girls on here would only be to happy to help u..
ses...... hope ur ok today i had two days that i can say were good days(though still had pain) but today the fatigue and pains have flared up again.. hope u and ur family are ok and hope to speak to u soon..
luv di xx
SES
Posted
here is examples of the pain etc......
* Pain: The most prominent symptom of fibromyalgia is pain. Unlike arthritis, the discomfort is not in the joints but in the muscles and ligaments. The pain is commonly located in the neck, shoulders, back, and hips. The tenderness is worse in the mornings and has been described as flulike, burning, throbbing, aching, or stabbing.
* Fatigue: Another frequent complaint associated with fibromyalgia is fatigue. In fact, it occurs so commonly that some doctors think fibromyalgia and chronic fatigue syndrome are the same disease. The severity of the fatigue can range from mild to incapacitating. In its worse form, fatigue can be so debilitating that some people have trouble keeping their jobs. No amount of sleep at night or rest during the day is helpful.
* Fibrofog: Another common symptom is a mental haziness some people call fibrofog. This refers to the inability to concentrate, memory loss, and depression that occurs with fibromyalgia.
* Other symptoms associated with fibromyalgia are headaches, nervousness, numbness, dizziness, and intestinal disturbances.
I do hope this helps, not a nice summary but once you know it is not in your head then you can learn to except your difficulties, and as I have said to others the only person that really understands your pain and fatigue is another fibro sufferer xxxx I do hope you are having better day too, along with you Di....... gentle hugs xxxxx
Squires
Posted
Sorry to hear of all the different reasons you are being given for the symptoms that you have. It it so confusing this fibro thing and can take a lot of time to finally get recognition for. Ive only been diganosed properly with it since July last year but feel that it had been going on for years.
Mine seemed to come about after having thyroid cancer and radio iodene treatment. Before I had my cancer never went to the doctors at all. Since then haven't been away with ibs, anaemia, aches and pains. also have OA in several joints and acid reflux to name a few.
I do hope your gp takes you seriously so you can get the help you deserve.
Keep coming on to talk to us all for support.
Love Tess.xx
p.s. I hope everyone else is ok today and not in too much pain.