I, again are not doubting that members who have mentioned their symptoms of Fibro have worsened as they have aged (in the poll) but wanted to discuss if there may be any reasons why this may be.
Are we receiving adequate treatments?
Are we receiving outside support?
Are or have we struggled with dismissive Healthcare Professionals?
Are or have other illnesses being missed at diagnosis?
Or are we not being reviewed regularly? (bloods etc)
Are other symptoms we report being ignored and put down to Fibro when it may be another undiagnosed illness?
These are all questions I think we may need to discuss as in some cases this might be the reasons some people are finding their Fibro is worsening or is it the fact that ageing has affects the body therefore making symptoms worse.
Your thoughts and discussion welcomed.
Emma
FibroAction Administrator
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Mdaisy
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I feel as though now I have my diagnosis, done the Fibro Management course, etc, that it's the end of it as far as the medical profession is concerned. Nothing is ever reviewed, I don't feel I should bother my GP with anything. no support from the medical profession ( but plenty here thank goodness ). The few odd things I have mentioned, like unexplained bruising, itchy skin, GP made suggestion…use aqueous cream as a cleansing agent) and that was the end of it. I don't feel I can go back to ask a second time. I know my depression has increased and I don't want to even bother to go and ask about it.
Interesting, as how do you know if common vitamin deficiencies like Vitamin D (known to make Fibro symptoms worse) or magnesium and many here (including myself) have low B12.
I wonder if some worsening of condition can be atributed to lack of support from medical profession in some areas or lack of follow up/monitoring of chronic illnesses. Would National Institute of Clinical Excellence guidelines would make the difference or purely more awareness & understanding by some healthcare professionals!
I was treated for VitD3 deficiencies but once my level got to 51, they stopped the treatment. I tend to avoid sunlight, must have been a vampire in a previous life, so I am sure that is still a problem for me. I did ask about taking it again and got told I didn't need it by one of the doctors ( and he wasn't even seeing me at the time either and didn't even know me.
Jilly, can I ask how your Dr explained away the bruising? I always have bruises, even when I can't remember bumping into things, but the Dr said vaguely that it might be a side effect of medication and left it at that.
Please go back a second time. you really need some more help to try and get you out of being in this depressive mood my love. We on this site are her for you and we will try our at most best to help you in any way we can okay. Please Take care and go back very soon. (((((Hugs))))) for you. smile :-))
I Agree with Jilly, once diagnosed with fibromyalgia it seems like the medical profession then use this as a diagnosis for everything else. It seems to be the answer for every symptom. Very dismissive. When I go to GP or Rheumy with any new symptom or concern their answer is "Its Just the fibromyalgia". A locum GP told me it was depression and sleep deprivation and if I got that sorted I would be cured! I saw a Counsellor through work and she agreed with me that I am not depressed. Yes I have a history of depression and I know what it feels like but at this moment I am angry, frustrated and fatigued and I dont need anti-depressants. It just feels like no one listens other than the lovelies on this site. I also have RD, Osteo and ruptured achilles so I think Ihave a right to be depressed if I was. Gentle hugs Joolz.x
I feel the same, once diagnosed with Fibro everything is then related. No support what so ever. I try things for myself but you don't know if you are doing more damage than good, but Doctors just don't seem to have any answers, no advice on haw to manage symptoms or anything else. There should be a clinic for chronically ill patients where you can go for advice on day to day issues as no two days are the same. My GP for one does not give any explanation as to why I seem to be going off my legs despite my efforts to continue to walk despite the pain. When my Asthma got out of hand over the summer they could not do enough for me, very strange.
Hi there, i dont know where you are but there is a fantastic clinic just as you described here in Glasgow. It is called the Center for integrated care and is based in the homeopathic hospital, it is fabulous and the staff are dedicated to "enhancing the health and quality of life" of people with chronic pain, exhaustion and or anxiety. I think the quality of life says it all really.
since I was diagnosed with lupus in 2005 and fibro in feb this year I still se the same rheumatologist and are always told any new or persistent symptom's are fibro/lupus. im not advised how I can help myself to relieve symptoms, just treated like im being a pain. I an still searching for a gp in my doctors surgery who has knowledge of both! I feel very alone coping/living with these (and other conditions) as medical professionals don't want to know. I am so lucky to have found support from the wonderful people on here x
My GP and consultant are very good they have told me I am very complicated (story of my life ) but my health care as far as i can see since things came to a head in jan have been brilliant obliviously if I had been in hospital things might have been done differently ,but it the NHS ,things take time. I haven't got cancer It has been suggested that I should be referred to Tommys but at the moment I am quite happy.
For me it's a complete lack of support from my doctors, lovely as they are, they are more reluctant to give me painkillers than I am to take them.
I've tried mindfulness and meditation which at times helps me cope with symptoms but it's never going to be the pain killer and sleeping tablet I need.
I have got worse as the years have gone on but I I think that's partly due to the fact I'm less physically fit, I used to run, do yoga and walk miles every day, now my bus pass is my best friend.
Karen x
My Doctors are not too bad, but they do tend to relate everything in my case to either fibro or menopause or just generally my age! My hubby worries that they may dismiss something. I just keep going back until I am satisfied that it isn't anything other than the above
Yes, this is an exceptionally interesting debate. However, since I have had Fibro for less than a year (well a diagnosis anyway), it really doesn't apply to me. I will come back again in 5 years and say whether or not my symptoms have deteriorated over time and if I feel my treatments etc have been sufficient?
I can say however, that my medical support has been fantastic! I openly admit that I have used the private sector on several occasions, and I had a private consultant and specialist. It could also be that I have received favourable treatment from my GP due to my very poor health in general with my COPD and severe asthma? Amongst other things! I am listed on a special patient register at my local surgery which is a fairly new government initiative to help keep patients out of hospital, so if I ring my GP I get in to see somebody immediately.
I have really been engrossed in all the replies to this post, and I urge everyone to have their say and put their feelings and experiences to the fore?
I had many years when physical health issues were dismissed as part of depression: I now fear that problems are incorrectly assumed to be FM. Like many on this site, I have several conditions which interconnect and interact in ways which seem unique to me and certainly do not appear in any textbook.
It is my experience that few medics take a holistic (ie whole person) approach so fail to understand a complex presentation. It worries me that the focus of treatment in conditions such as FM, ME and IBS is solely on coping as further investigation may provide answers for some individuals (as demonstrated by many stories on this site).
We are time-consuming and expensive patients. We are also predominantly female and middle aged. I fear this also makes us a lower priority.
Hi, I have also experienced very little support from GP and a complete disinterest with regards to pain, cognitive problems, fatigue & weakness making it difficult for me to walk and function. For example When I lost the feeling in my leg for weeks I was told just Fibro.
I had to go private to see Fibro specialist to get any treatment at all - unfortunately I reacted badly to amitrityline (& other antidepressants), pregabalin, muscle injections, etc. the only relief is from gabapentin but if I take regularly it has no effect, so only take on worst days. Unfortunately the specialist passed away, leaving me with only the GP to turn to.
Went to pain clinic (4 appts over a year), who discharged me as they say there is No more they can do for me as I try to stay active and pace myself.
My GP is reluctant to diagnose any other conditions. I had to see him 3 times before he would do Vit d test - I was deficient but he would only give me a multi vitamin! (Another consultant months later prescribed a high dose Vit d to correct levels). The pain clinic had to write to GP to tell them to investigate pain in my ribs which turned out to be a deseased gallbladder & that surgeon finally listened to my concerns about tailbone pain & blood in toilet & referred me to have colonoscopy, which revealed a pre-cancerous polyp!
When I started having vision problems, I had to fight for GP to refer me to a private neurologist so I could have an MRI scan, which revealed an aneurism on my ophthalmic artery (which apparently is not causing the vision problems, but now needs monitoring to see if intervention is required). I had to go to a&e with loss of vision & numbness down one side to be diagnosed with ophthalmic migraines which cause me to loose sight in one eye temporarily. But again no treatment (at the time it was thought at a&e that I'd either had a stroke or the aneurysm was leaking, luckily neither were the case).
I do often wonder if there are other things going on with me which are undiagnosed and whether I could get more relief from my symptoms if I knew what was causing them - for example my worst problem with mobility is my pelvis & lower back, yet I have never had X-ray or scan of these areas.
So after all that, I think the point I'm making is that yes, the deterioration of my own Fibro, could possibly be down to poor support & possible undiagnosed other conditions.
However, I do try to remain as active as I can (horse riding twice a week but unable to do most other forms of exercise), I try to pace myself & manage pain with alternative treatments (tens machine, arnica tabs & gel, massage & gabapentin), but my mobility is still deteriorating, as is my cognitive function, to the stage I can no longer work to the standards required and whilst my company have been very understanding, I can not reduce my hours any more & I already work from home, so my next step is to be made redundant! So in my mind I have certainly deteriorated from my diagnoses 2.5 yrs ago.
Sorry for the long post, but hope it explains why I feel my Fibro has got worse x
Firstly I think we have a great medical system in this country.
HOWEVER, it is creaking at the seams.
We seem to treat one set of symptoms, not the whole person, but that is changing - like giving paracetamol for a headache, not finding why we have the headache.
That said fibro seems to be quite complicated. The mother site and NHS choices are informative and suggest a series of tests but is it really as simple as "tender points"?
Like Ken I'm only recently diagnosed so wont say much. - last meeting my Dr even suggested it might not be fibro after all as it seems confined to the shoulders. That's not entirely true as other parts ache but nothing like as much.
I have arthritis (and IBS) which does seem linked but give similar symptoms on its own.
I've had 2 sessions with a physio who then said if I keep up the exercises my body should adapt. This comes back to creaking at the seams. Our physio dept has a waiting list of 250 yet 90 people failed to turn up for appts so you could nearly halve the list if those who wont come actually said so. I can sympathise with the department prioritising patient care. It does seem to say that health professionals may not have enough time to investigate fully.
As to vitamins, I was deficient in D but treating that did not alter the pain.
This is all a bit simplistic but I hope gives a good general overview.
I do not think our expectations are too high at all. I think we should all get high expectations because, we paid and are still paying for the NHS to deliver what the Government said we should be getting ie Good Hospitals, Early Treatment for serious health matters, not that to those in the know, think that Fibromyalgia is not a serious health matter when it could be if not taken seriously enough. So I think if I am on my own in this discussion, that we should have High Expectations all the time!!! Smile :-)) and a Wink
Hi - my fibromyalgia was diagnosed by a Dr working for Atos with the comment of how badly Id been treated & how certain she was of the diagnosis having read my medical. file. I hadn't realised that there was a medical condition which housed most of my probs under one umbrella. Was grateful after all the stress and worry they'd subjected me too, as we well know the stress worry and anxiety they caused just make the condition even more hard to bear both physically and mentally.
I have a wacky theory for you to chew over...... many of our fathers/grandfathers served in the two World Wars. The men in the services were subjected to horrendous physical battering, as well as being stuffed full of antibiotics and all manner of other chemicals to "protect" them from getting infected. Then ....there was nerve gas in the trenches and other horrors. Having studied genetics, I wonder if these events affected their chromosomes, to such an extent that their offspring are now presenting with immune systems that do not function as they should.
In the Western world, we also breathe in a deadly cocktail of chemicals, just walking beside traffic, or when cleaning the house, going to the hairdresser, when travelling by air (who else can hardly breathe after the meals have been cleared away and the cabins are infused with "air freshener"?) just to name a few.....surely these MUST affect our body chemistry?
As both our GPs are dismissive, (apart from my husband who gets every help with managing his diabetes!) and put my chronic symptoms (6 years now) down to "getting older" or erratic sleep and tiredness. I lost patience with Rheumatology Consultants who seem to be only interested in joints and mobility issues, I have now been referred to an excellent Pain Clinic. Only problem is - after the first consultation (with a very sympathetic Greek lady Doctor) I have waited nearly 6 months for a course of Acupuncture, which she wants me to try before further assessment. I retired from my work in Pharmacy early (at 58) and so cannot afford to have this done privately. There IS quite a lot we can do for ourselves, like eating a balanced diet and "pacing" our activities. I just wish I knew if the medications I am taking are going to help in the long run, or just give temporary relief.
Meanwhile, life seems to be "on hold" as it is impossible to commit to doing anything definite, as I never know if my body will let me do as I'd like to. I'm very fortunate to have an understanding husband - I don't know how you loners cope on your own, or those with young children! You need a medal for bravery !
I think my symptoms and the affect on me as a person have definitely worsened since being diagnosed just over 4 years ago.
I can sympathise with everyone on the 'its fibro' conversation with the doctor. I have falls which are becoming more frequent last time I went in to address this problem the reaction I got (well its not a new thing you have been having these falls for quite some time) really upset me so I went home and phoned the surgery and insisted the Dr phone me back. I said I know its not a new thing, but it doesn't mean that it is acceptable. I know I keep mentioning it, but if I felt like you were trying to help I wouldn't feel the need to keep mentioning it. On Tuesday I had to go to see the Dr again and brought my daughter with me for moral support as I felt quite uncomfortable about going back. All of a sudden he was asking my daughter about my falls and referring me back to the neurologist.
I cant help wondering though do our symptoms really worsen or do we just become so ground down by them. When I think back to my days before being diagnosed I was in agony and just so confused by what was happening. Gabapentin and pain killers helped enormously but years of being 'ill' just make them less effective and begin to change the person enormously.
I was almost bullied into 'admitting' I was depressed and told that depression can cause pain. It took me ages to explain that IF I was depressed it was CAUSED by being in pain for years on end not the other way round.
So I think to an extent it is the 'fight' to try and live as normally as possible, beating yourself up when you cant, the lack of support etc. etc. that add to the worsening of symptoms. We all have those flares which sometimes seem like the last straw when trying so hard to be normal.
I could probably go on for hours but let me round this off with one wish for us all - let us find the cause and then hopefully a cure for this evil, life stealing disease.
Thank You for your comment, very interesting to read thanks for sharing.
I think your description of 'life stealing disease' if very apt for some with severe symptoms and may help members of the public realise how badly it can affect people.
Trying also stay on the positive like yourself, we must pull together to make a difference, change opinions and get further medical help for Fibro
I don't know about the age thing so much, but there could be a point and especially in the diagnose of maybe other ailments. I have had bad pain in my right hip and back for ages. Had lots of x-rays and mri to no avil until i had a bone scan and the doctor that i saw his name Dr Smith no less, asked if i had ever heard of Fibromyalgia I said fibe who? He wrote the mane for me and said to look on the computer and it would tell me all about it. He was so right!!! No bone disorder just Good Old/Young Fibromyalgia. Had it for years. WOW!!!!
My experience is once diagnosed by Rhumetologist in U.K. My GP has just written me off. Happy to give out repeat scrips but that's it. Totally unsupportive no condescending at appointments, so much that I don't go anymore. Just get dragged in every year or so for tick in box. No support for fibro, no bloods done, other symptoms rejected or just bundled under fibro, even an hernia! Told medical profession can only do so much.
I'm a 49 year old male spoken to like I'm a retarded 90 year old. I get zero support from the NHS. Even now when things have worsened and I have asked for help I am fobbed off.
I am a lawyer, spent twelve years in the military and worked all my life before fibro ground me down.
I think it is progressive but aging and a sedentary lifestyle due to ongoing pain plus side effects of Meds have to be considered.
I am a positive individual this is not negativity just observation of the truth.
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