I went to see the rhmeumtologist (think that is right) last September and was told I had hypomoblity and fibromyalgia but luckily my hospital has a fibromyalgia clinic where I would be seen. So I went for my first appointment today and got to see that no one not even doctors/specialist understand this. I had to see 3 different people physio who was lovely and understood how I was feeling she asked what exercise I do and I was honest and said none as it hurts so she is going to get me in to see her to see if physio can help. I then went in to see the therapist who was asking if I had been depressed in the past which I was when I had my little girl I had PND but with in a month or two she was a better baby and I was fine. She asked all random questions and then asked me what I wanted to do about it as looking at me I don't need a pain management course I just need someone to talk too. I can tell you I'm not depressed and have a very good support network. She said maybe CBT will work but I will have to go to the doctors for a referral. Last was the specialist who after being told that I have hypomoblity at my last appointment and when I was a teenager she says it's normal! She then went on to say that I would be fine and it will go away one day (after being told that it wouldn't).
She said I should not have to much stress but I am really stressed now as it just goes to show no one does understand this. I think all doctors should be able to walk a day in our shoes to see what we put up with.
I feel like no one understands and think I'm making it up!
Sorry for the rant but had to get it out hope no one else as to put up with this
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Hols15
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you rant all you want very few of have not felt the same.and it is really maddening. we seem to take in turn to rant about the lack if knowledge that we come up against on a regular basis...lots of hugs sue
no wonder your ranting your unlistened to ok there is always a little in what they say exercise would be great but it is so difficult when it makes your flare and the only way is baby steps and pretty much as it goes cause fibro doesn't allow routine as such well try not to take to much notice although this is difficult but try to relax and take things in your own stride. :))
I read your post with a great deal of pain and frustration for what has clearly been an unacceptable ordeal for you today. I am so sorry that you have been treated with such total disregard. I just wanted you to know that as a fellow Fibro sufferer that I completely understand your pain and your frustration with this.
I was wondering what your next move might be? Is it returning to see your GP? Or trying to see a different consultant etc? A good counsellor never directs the flow of a counselling session. They allow the client to take it wherever they need to take it too. So if you decided that counselling was the route you wanted to go down then you should be allowed to release your problems to the counsellor, and in your case, it's the people working within the NHS!
I sincerely hope that you can find some semblance of resolution to these issues.
I do feel for you - I think you will realize that many have a struggle to get the medical 'profession' to recognise your situation, meddically and emotionally. I developed fibro after a couple of nasty auto immune conditions and it was a physio who seemed to be most 'on the ball'. Since then (nearly 14 yrs ago) I moved and have had more struggles getting the right kind of response. Do join a local fibro support group if you can and as your gp to refer you again because you obviously do need a proper diagnosis. Good luck.
What would be nice is that all dictors were signing from the same hymn sheet, so to speak. I really feel for you and totally understand, that to be told one thing, then something else, is just not good enough.
If you didnt have depression, its enough to spark it off! All you asked for was a diagnosis, not to be shoved around to be told one thing then the opposite!
I dont think when doctors do this, do they ever bother to read your notes, or consider the mental effect tat it has on us.
Its like them sticking a pin anywhere on a map, a edical map maybe! I can feel your frustration from here.
I'm affraid i dont have the answer but i'm sending you some ((((((hugs))))))
Gentle hugs. CBT can and does help but you are right, not all medical people understand Fibro. And Hypermobility syndrome has similar aspects to Fibro. My old GP told me I had been hit by a double whammy as I have both.
Me too Jilly and I also agree with CBT as I also feel it helped
Hi Hols
Jilly is right and my doctor also said I was unfortunate to have both so did my pain consultant. Double Whammy is the perfect descriptor.
I find both conditions fight each other making it difficult to progress and that I've been in a vicious circle for most of my life. It sounds like you're also enduring that right now
A lot of people are hypermobile but I personally disagree with specialist doctor saying its normal because speaking from a life time of personal experience it is far from normal and no! it doesn't go away
All that aside it is my personal opinion that it is important that we keep a positive outlook, exercise to the best we can, which for me is very very little at the moment, be careful and most importantly pacing!!
Also, in my own personal opinion being knowledgeable about the illnessess that we have so that we can confidently approach the professionals is better because we sound like we know what we are talking about.
You know your body better than anyone hunny sending calming fluffies your way
I agree, it doesn't go away. There is a scale on which the level of hyper mobility is measured. I scored at the top, a nine, as I think you did too. It is normal for a lot of people to have SOME hyper mobility but then there are the others, like us, that have it to the extreme.
Hi hunny I'm sorry to hear the news about your hubby no wonder things are really tough for you at the moment.
xxx
Hi Hols15,
This was me on Tuesday. I was told to exercise and I'd be fine. I can't get up or downstairs aged 37. My hips pop out so much so that I keep tearing the cartlige and tendons, but the consultant I saw said this was normal for someone as old as me (?!) and everyone is walking round with similar damage and getting on with life fine. She even told me not to both having any more surgery and exercise would be more beneficial. I've lost the support of my parents since Tuesday, as they thought 'there was something wrong with me' and now this woman has told them there isn't really, I just need to exercise more.
I've found a website called hypermobility.org.uk that looks like it understands a lot more about the condition than my own Drs, so you might want to have a look at that? There are useful articles on there.
I understand what you are going through, and it's shocking that there isn't more understanding about these conditions we have, particularly when they have the capacity to turn our lives upside down. I hope you find some answers soon xxxxx
Must dash now, parents are shouting at me to get on the exercise bike...so this is life from now on...! Xxx
hi hols15 i would want a good rant to if had been given mixed messages from all the so called health proffesional when all you really want is to get help & understanding,when i saw my rhuematolist she diagnosed fibro ,hypermobility ,chronic pain she was really good all my symptoms tied in with this she sent me for hydrotherapy they can't say the same for hydrtherapy dept.x
Hi Hols,
Oh boy how I sympathise with you. I feel as though I am in a similar boat, I was diagnosed with fibromyalgia about 30 years ago - Since which time nobody has done a darn thing about it. I was born with a renal condition which is difficult enough to live with. Over the years I have tried to cope with all the aches and pains. However, last year I had a really bad flare up, I wasn't sure is was whole related to the fibro. The doc flipped though my notes and looked at me almost accusingly and said "you have been diagnosed with fibro.." . After explaining that I knew that, but this particular bout of whatever was particularly bad. I came away with the feeling that I had been talking to myself or the wall, there was certainly nobody else in the room who was listening.
I find that now i have been to a specialist and top doc and pain clinic, everything is fibro. I have a phys back problem from birth which means more pain, as its going to get worse as i get older i wanted it looked at to see if it was worn down dangerously, they refused as the pain is not back but fibro, althoough the back problem existed b4 fibro. I am just glad i was in the Navy since i went via our own private hospital to sort it out, but i should not have to.
Thank you everyone for your replies. It's funny really when I came out the hospital I wanted to write on here straight away. I think it's because I know everyone on here feels the same and knows how we all feel. I've been feeling very low the last few days as feel like no one understands but think I'm just going to get on with it now! X
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Strange feeling in my head
My Progression with the nhs.
Off my head with pain
Electric Shocks in my head.
