Does anyone really care?

I was diagnosed back in 2009 with fibromyalgia and osteoarthritis and since then the list keeps getting longer. I used to live in England but moved to wales in 2016.

It seems hard to be able to access the health needs and where to go for help and advice both in England and wales.

Since been diagnosed with the two first problems I have also been diagnosed with degeneration of the spine, and a gap in my left knee. Last month I was also diagnosed with hyper mobility condition. Great.

Pain seems to be my life long enemy these days. I can hardly walk let alone buy some shoes that either fit me or support my feet and feel comfy.

Those days that you feel so much pain that non off the normal pain reliefs will work for you. I have managed to obtain some morphine from my Dr for those days that hurt more,but its a toss up between pain and being aware off everything around you.

I have been to everything that you can think off ,rheumatologist 3 times, pain clinic once but they was a waste off time and energy, cbt done it,didn't help. Physio done, pills done, podiontist I had to ask to be referred too, so I have two that are helping me,but for the special foot ware you have to be in a certain category to be able to have the foot ware.

When ever I go to my drs it just seems a waste off time, I changed who I had seen as the Dr wasn't very helpful or understanding. She had sent me to a pain clinic but didn't say where it was. The health care in Wales is very few and in between. They had sent me to south wales for pain clinic which would take me 4 hours to get too. My point is that it seems that you have to figure it out for yourself off the help you can get. I'm waiting now to see if I can have help from across the border ,that's if the Welsh government accepts it. As they only have 2 hospitals that deal with these sort off health problems. Non are located in Montgomery. All outside off it. I'm waiting to see if they will let me be referred to the Q.E in Birmingham.

Just seems like once your referred, diagnosed the health professionals don't want to know or don't know his else to help you.

Don't even get me started on the pip benefit. With that you have to be on drugs, confirmed that you can't do anything for yourself and physically not able to walk.

Its so hard to live and be disabled, you see a lot of disabled people able to walk and work,but many off us find both difficult to do. It becomes frustrating, when you have to deal with fatigue and pain,no one understands and everyone is too judgemental. Your labelled and judged all to often.

11 Replies

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  • I feel so bad for you that you really are cut off from the support you need being in the location you are. Being closer to the medical facilities though, doesn't necessarily mean that the treatment and support is better and more accessible. Do you have family to help you at least?

  • I do when they come over from England to visit me, other than that I don't have anyone else as my son goes to college and my daughter isn't much help to me .

  • I'm so sorry to hear what your going through, I wish I could have an answer for you or some advice, but I'm sorry I don't.

    My symptoms are no near as bad as yours... But I've been for blood tests and ultrasound and all came back Clear, but I'm still experiencing pain in the Abdominal area, Stools always different and unintended weight loss.

    one doctor said its Anxiety and wanted to give me medicine for it, I said no to that... I had to beg him for a scan to be done. He was a shit doctor.

    I've developed Anxiety and depression now from all of this and I did CBT which didn't help at all to be honest.

    In some ways I kinda understand what your going through and i hope you'll find a good medic that can help?

    I Wish you all the best and I hope you'll be on the recovery road soon.

  • Hi there, for what you ate going through have you looked that it could be IBS? I have stomach pains quiet often. Never been diagnosed but I know it is. I also have anxiety and have had depression in the past.

    Thank you btw.

  • I'm sorry you are going through this. The NHS is wonderful if you have a broken leg but if you have a chronic condition what can't be fixed, then it's hard to get the support you need. I have the same conditions as you have (except for the knee problem)

    Is there a local hypermobility support group available in your neighbourhood? I believe that that might be your main problem and that the other conditions are secondary, when your connective tissue is faulty lots of problems arise (arthritis, bowel issues Fibro, PoTS, depression, joint problems, foot issues etc etc) . It's a condition that you are born with but its badly under diagnosed as most doctors don't look for it.

    Do not let it stop you to apply for PIP if you think you deserve it. My mobility is badly affected and receive the higher mobility part of PIP..

    Just wishing you the best for your journey, do ask your GP for referrals if you need it, it's not easy living with pain. I have been under the care of a pain psychologist who is helping me to accept a life full of pain instead of me fighting it. It does not take the pain away but it take some of the power of the pain away and helps you manage it.

    Take care of yourself and don't give up! x

  • Hi

    Wales does not have much help available close by. I have already emailed my mp and my email ia going to be passed on to another mp who deals with this sort of thing. Its difficult for me to mingle in groups as I don't feel comfortable with others around me and society itself. So a group thing wouldn't be the answer.

    Thanks anyway

  • Sorry you don't feel comfortable with the group thing. I have done a pain management group thing before but now get some help one to one.

    What kind of help exactly are you looking for?

    It's hard to live with a condition that can't be "fixed" by doctors and you need to manage yourself,

    Pacing helps the best for me (taking life at a really slow pace), medication takes the edge of the pain and the only other thing you can do (except for living as healthy as possible) is to accept your situation and stop fighting it.

    Hope you find the support you are looking for.

    🤗

  • Hi demonica . I think we have to accept that no one is going to care as much about our chronic pain as ourselves. The health system is overloaded and services do vary according to the area yiu live in.

    I am sorry you found the pain clinic unhelpful. Did you do a pain management course ? I found mine useful and eeting others in sort of the same boat felt encouraging .

    What kind of medication do you take for your various conditions ? Sometimes a change can make a difference as our bodies do become accustomed to a particular kind. This is where a pain clinic can be useful as they have better knowledge of pain medication. Sadly there is no such thing as a pain killer. The best we can hope for is pain reduction.

    I dont know anything about foot problems. Certainly a podiatrist should be the one to advise on that.

    Hopefully you will find someone from Wales who can give you more local advise.

    Dee

  • I live in Perth Western Australia.Our health care system is a complete joke.I agree with everything you have said ,in regards to pain clinics!!!!!!well what a waste of time and effort.Ive been at the same clinic for 24 years and feel like a dog chasing my tail.Our health system fails us all.It seems to be the same everywhere.If its not a physical disability then its in the too hard basket.I hope things get beter for you.

  • Hi Demonica-- My name is Tim and I live in USA--Wisconsin. I agree with you that many doctors really don't care about their patients condition beyond their meeting with you. I have suffered with pain in my SI Joint region for 5 years and none of the doctors have ever mention SI Joint. Today (8/10/17) I had an SI joint injection. As of right now it's too early to say if it is working--usually takes a few days to kick in. The good news is that the doctor that did the injection said that if this doesn't work he has some more ideas--I have never had a doctor say this to me.

    You have to really stand up for yourself at doctor appointments even it means an extra half hour of face to face time and telling the doctor you really need to get to the bottom of what is wrong. If you took your car to get it fixed and the repair guy charged you for something that didn't fix the car expect you to pay? It's just ridiculous how poor many doctors are at relating to patients.

  • Hi all,

    I think through a bit off researching around a lot off conditions are down to genetics. If I re find the link I will re post it for you.

    I have tried a lot off medications and you know non have any effect on me, a glass off wine has more effect on me than drugs do. I took some morphine last night before I went to bed. I thought I'd have the hung over effect afterwards but I didn't. Had a slight headache and back ache on my left side but that was it. Didn't feel tired,nothing. I was up at 5.30 am went to bed last night at 11pm. From what I had researched this is down to a missing gene or genetics in my make up. Scientists in wales uk can't remember where are researching into this. This is why drugs don't work for me.

    I'm not over pained today tho, I had done some household tasks, and did not feel any pain.

    The weather also has an effect on my body and so does the air pressure too.

    I have also had the injections in the past for pain relief but they made me feel worse than I was. Not having those again.

    It is really hard too get any help, and it seems that everything is just a job with money at the end of it. Get patients in, chat do, but not putting much effort into helping them. In and out job.

    At the end of the day its just a job and not really helping those who do need the help. Everything is just either to much effort or too much paper work to help those with multiple conditions.

    I was diagnosed a few months ago with hypermobility syndrome. Dr says I don't have this, but podiontist says I defiantly do have this, he said to me the other day that my Dr didn't know what she was talking about. I couldn't off agreed with him more. So I had found another Dr in the surgery as we only have one surgery in the area off where I live. The other surgery is about 8 miles away and is adjoined to the one I'm already with. I couldn't get to it either. Just one of the downfalls to living in a village miles from any where.

    So this is where I am at so far. I have got some leg straps to help with my knees as they keep trying to go under neath me. Still waiting to see if I can be referred into England for a pain clinic specialist. Will let you know how I get on.

    Thank you all for the reply's.

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