Lack of Support can anyone help

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Lack of Support can anyone help

Postby julesleics » Fri Oct 25, 2013 5:45 pm

I too have found problems getting help and support. I was asked to attend a pain management course a couple of years ago and it was like boot camp. I found myself unable to do the exercises and was so exhausted I just burst out in tears to the disgust of the people running it who told me to pull myself together. We were not supposed to discuss with other people what problems we had but we did and found that out of the 12 of us there I think half were there because they suffered with headaches, about three were there because they had depression but they couldn't understand why they had been sent on a pain management course and there was one lady who had ME who like me was unable to do the exercises.

It came out that four of the group regularly attended the gym and the exercises were a breeze to them so the lady taken the course decided to up the exercises. I remember clearly her telling me I wasn't trying hard enough and she she got hold of my arm and yanked it up causing great pain. I was unable to concentrate and on returning home was so bad for the whole of the week. I felt like death but the following week my partner took me again and I tried to explain how I was feeling only to be told mind over matter. I was so bad I had to ring my partner to fetch me. I returned to my GP who decided it wasn't suitable for me and advised I didn't go again. I let them know but I think you know what happened next it was a black mark against me with the pain clinic who promptly discharged me.

Originally I attended rheumatology but the consultant who now runs that department told me last year that I am not a rheumatoid patient so I should not be in his clinic. We have moved this year (same county) and I am now on my second surgery as i have come up against brick walls as to getting any help (I have other problems apart from fibro). All i get told is learn to live with it which I try very hard to do but it is not easy.

I used to have a nerve root block injection once a year (this was for another problem) and that helped considerably with the pain I had from this other problem and it helped me cope better with the fibro but alas I have been told I can no longer have this. I have been told I am obese and need to lose weight and I should diet and exercise more which I admit I am overweight but i have been gradually losing weight over the last two years slowly but at least I have been losing it.

My old surgery was really good as I used to see the nurse for my asthma and she helped me with other things as well and gave me encouragement with my weight loss. Now I get told you should try and lose weight and exercise more. The first drs we went to sent me to the health professional who gave me a lecture on dieting and exercising and told me I have to learn to live and manage my illness and not come bothering the surgery as there is nothing they can do for Fibro. They put all my medication on repeat even my antidepressants. They never asked me about why I was taking the different drugs (by the way they had not got my notes at this point so they were working with a blank sheet) they just seemed perfectly content to take my word that I took these drugs and put the drugs on repeat.

A similar thing happened at the second surgery I went to again they just put everything on repeat and told me that there is nothing they can do with Fibro so basically don't bother us. To cut a long story short I was told I could have an asthma reveiw in a year (at my old surgery I used to have one every six months), I was also borderline for diabetes and my old surgery used to do regular blood tests and also I had been borderline for underactive thyroid and the last test showed it had gone underactive and then they repeated it and it was back to borderline but again i was told that there is no need for me to have blood tests as I was only borderline. So no more blood tests. I was told I could have a review in a year but I could do that over the telephone. I had an asthma attack so I had to see a doctor who was very good and got it under control but then said I could discuss my asthma when the review came up. I tried to explain that I felt rotton but she said it would pass.

The nerve root block injection wore of and the last few months I have been in a lot of pain both with the fibro pain and this other pain. I saw a doctor the other day who suggested I could see a Psychiatrist but basically there is not a lot they can do again I just have to learn to live with it. However, he did prescribe Pregablin and said he would put it on repeat so if i got on ok with it i could just put in a repeat request there was no need to come back and see anyone which I was surprised as I would have thought a gp or nurse would want to see how I was getting on with it but no it is the same with my antidepressants they are just on repeat no need to come and see anyone.

At the moment I just feel out on a limb I was discharged from the Rheumatology, the gps don't want to know and I am so down at the moment and just feel I need some support but I don't know where to turn. The rheumatologist was horrible and picked up on the fact I suffer with depression and he too (sarcastically) said I could always see a pschyatrist so when the gp said the other day I started thinking they think it is all in my head.

My partner suggested I write on here as it might help me to be able to put down how I feel. I have good days and bad days but at the moment i am really struggling and getting very low and down again but feel isolated.

I feel like the medical services don't want to know and I am just being dismissed and i just don't know where to turn.

As i say i have been prescribed pregablin which i have started taking and i feel dizzy but i understand that is a side effect. I assume that i just carry on taking it as the gp said there is no reason to come back. I feel so down at the moment and to be honest I feel like nothing is worth it. I am sorry to go on but i just need to let it out.
Last edited by FluppyPuffy on Fri Oct 25, 2013 7:40 pm, edited 1 time in total.
Reason: Made paragraphs smaller for easier reading.
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Re: Lack of Support can anyone help

Postby pops » Fri Oct 25, 2013 5:59 pm

So sorry to hear your experience. Dont let them get you down (I know easier said than done) Im on pregabilin and its change my life so much. I know Im lucky. My gp who was great retired & my new gp is fantastic. Keep strong. Please fee free to rant & rave as much as you like. Sending you a much deserved hug.xx
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Re: Lack of Support can anyone help

Postby julesleics » Fri Oct 25, 2013 6:56 pm

Thanks Pops it is much appreciated. It is just I feel out on a limb at the moment as there doesn't seem anywhere to go for help.

I would imagine with Pregablin it takes a while for it to work. I feel quite dizzy with it at the moment but I am going to persist. As I say GP doesn't want me going back hence putting it on repeat which I felt a bit odd because I thought normally when you start on a new tablet they like to see you to see how you are getting on with it.
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Re: Lack of Support can anyone help

Postby johngis » Fri Oct 25, 2013 7:10 pm

Hi There Jules, what you are going through hundreds of us have too, saying that you DONT have to go it alone, if you have a Facebook account, pop over and say hi, we have some wonderful people to chat with.

https://www.facebook.com/groups/FibromyalgiaDaze/


See you there

John
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Re: Lack of Support can anyone help

Postby FluppyPuffy » Fri Oct 25, 2013 8:08 pm

With you starting this topic Jules, and making the same post on a topic that was already running, I have removed the one you attached to the other topic as it hasn't received any replies, whereas this one has. I've done this to save on the confusion and chaos that inevitably follows when people reply to duplicated posts.

Pregabalin does take time to take effect. It needs time to build up in the body, for some this could be a month, but for others it can be as long as 2 to 3 months before they start to feel any benefits. The side effects do tend to start and reduce after a while, and eventually tail off for the majority. The dosage also tends to be increased over a suitable period of time until the prescribed/suitable level is reached.
julesleics wrote:As i say i have been prescribed pregablin which i have started taking and i feel dizzy but i understand that is a side effect. I assume that i just carry on taking it as the gp said there is no reason to come back. I feel so down at the moment and to be honest I feel like nothing is worth it. I am sorry to go on but i just need to let it out.

If you feel that things aren't quite right with the Pregabalin, then you could ring your surgery and see if it is possible to have a consultation by phone to go thru your worries and concerns.

As you are feeling so disappointed with this 2nd surgery, you could always get in touch other surgeries in your area and ask if they have any patients registered with FM and/or other similar conditions. If they do, you could then enquire about whether and GPs have an interest in such conditions, or if there is one who tends to see these patients. You could also try this with your current surgery rather than seeing someone who doesn't give you the support and care you need.
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Re: Lack of Support can anyone help

Postby julesleics » Fri Oct 25, 2013 9:26 pm

Thank you so much for your support. I posted first of all then suddenly thought to start it as a new topic my brain is all over the place at the moment so sorry. My old surgery was really good as well as having a good GP we had a good system of nurses and because I was under the asthma clinic (it was through that they picked up I was borderline for diabetes) as well as helping me with my asthma the nurse was very understanding and encouraging especially with my weight. I had put on a lot of weight and I have lost a stone in just under a year which might not seem a lot but I was really chuffed about it as I find it very hard to exercise although I do try to do some walking when I can and I think the upsetting bit was being told I was obese and if I lost weight I would perhaps feel better when they hadn't even bothered to see that I was trying.

The first surgery I went to said that FM was just one of those illness that there is nothing to be done about it and you just have to learn to manage and cope. The surgery I am now as the same attitude. The first doctor i saw just put all my medication on a repeat and shrugged when I mentioned the FM and with regards the thryoid and borderline diabetes the attitude was you haven't got diabetes and you haven't got an underactive thyroid you are just borderline and if you do develop diabetes then you can attend the diabetic clinic but as to repeat blood tests the answer is no because they cannot justify doing them when I am only borderline. She made it quite clear that there was no need for me to bother them with the FM as there was nothing they can do. The second doctor I saw when i had my asthma attack was very good but alas she only works one day a week as an on call doctor. Then the one I saw this week was quite to the point and pointed out to me that at the end of the day you just have to learn to manage and cope. He pointed out I was already on antidepressants so there was no reason for being low but did ask if I wished to see a Psychiatrist if I felt i was depressed.

He did prescribe Pregablin but just said if I had any side effects then I would have to stop using it other than that if I was ok just put in a repeat request. Apart from that there is nothing more he could do and reiterated the point that it is all about managing your illness and coping with the pain.

I understand that many other people are in the same boat as me and i am not alone but it is just at times i feel so isolated and I have been so down and feeling alone in this which I know is wrong because I am not alone but I think at times it is hard. I am getting so confused just lately and I am so tired i am making more and more mistakes which I know is part of the problem. As I say in the past I have good days and bad days but this time I have had a really bad flare up that has lasted and things haven't been getting any better and I think I am just in a spiral and I am getting really low again.

I appreciate you all replying. I feel it has helped just being able to put down how I feel and thank you for the advice about pregablin as it has not really been explained to me. I will certainly stick it out for a few months, as you say side effects tend to start and reduce after a while so it is certainly worth sticking it out. Thank you for letting me know it could take a couple of months for it to take effect as well I did not know that.

John, I am not actually on face book but I might just register for it.

I am sorry to have gone on but I was just at such a low ebb and I know I am not the only one struggling but I needed somewhere to turn.

Thank you all you have replied and have a good weekend all xx
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Re: Lack of Support can anyone help

Postby debsmith » Tue Oct 29, 2013 9:04 pm

Hia hun poor u with so much ignorance!!!!! Some doctor,s realli shouldn't b practising tbh!!!!! I had a similar problem with a A@@ H@@@ at my pain clinic I'd get seen almost a year between appts!!! Then he,d sit in his chair and smirk!!!! After two times I'd had it with his attitude + my doc,s surgery I hand delivered a stinking letter regarding they failed in there duty of care please don't forget "duty" "of" "care" they tend to shift a bit once u utter these words!!!!! I saw pain clinic who refered me for pysio yet still waiting! ( 1 year! ) He just kept on about a pain toolkit sorry but that doesn't help! I did send a wicked but truthful letter and how would they feel living 24/7 in pain coping on 2-3 hrs sleep a nite! Etc and I did say how arragant and rude he was and how it made me feel so don't b afraid to complain regarding ur care I point blank refused to see this iddiot again saw lovely lady recently who was amazing!!! I also said I was made to feel it was in my head she wasn't happy about that at all!! So I guess he will have his BUTT slapped oh how I wish I could b a fly on wall!!! + pals were useless I mentioned this too re: ur doctors surgery I'd write similar letter to general medical council but 1st write to dr,s concerned practise manager! Unless they get complaints all think all ok u have a right to care,respect and dignity good luck sending hugs debbie xxxx
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Re: Lack of Support can anyone help

Postby julesleics » Tue Oct 29, 2013 11:28 pm

Thanks Debbie I think I have been unlucky since moving as this is the fourth dr who has been dismissive. The first surgery i tried hadn't even got my notes and took my word that i was on the medication I was on. I had just wrote it down on a piece of paper thinking that if they hadn't got my notes through then they would have probably just given me enough to see me through till the notes came through but no they put it all on repeat and made it clear that fm is an illness that cannot be cured you just have to learn to live with it. Anyway cut a long story short the second surgery isn't much better.

I just feel there is no support. I had physio the other year but was only able to have this for a short while due to the rules being you can only have six sessions then have to have another referral and then being discharged because they are not able to do anything much regarding FM so it is a waste of their resources. My old surgery had a brilliant nurse who I saw for my asthma and she was really supportive. The attitude where I am now is very much yes we agree you have fm but it is an illness we cannot cure and you have to learn to live with it and manage it. The Rheumatology do not want to know and the GPs do not want to know. All I got offered the other day was we can send you to see a psychiatrist if you want but failing that we cannot do anything.

I am not asking for a lot, at least I don't think so, just some help with pain relief and a bit of support but basically they are not interested. I have other problems but again they don't seem too interested in them either. I was told when I first went to the surgery and they put my meds on repeat that I could attend the asthma clinic in a years time but apart from that they wouldn't expect to see me again until the following year for a medication reveiw (bit of a laugh really because they didn't bother, when they put my meds on repeat, asking me anything about them and how I was taking them, how long I had been taking them etc). The doctor I saw made it quite clear that fm is an illness you just have to learn to cope with and it is no use running down to the surgery about it as there is nothing they can do.

The GP I saw the other day has prescribed Pregablin but again just said if i get side effects stop taking it otherwise if i am ok on it then just put in a repeat request which I thought was odd as i would have thought they would have wanted to see me to see how i was getting on with it. I did telephone the surgery to raise this but was told there was no need to come back and see a doctor if I was ok on it and didn't suffer the side effects just carry on taking it there was no need to take a doctors time up about it. I just explained i was concerned because I thought the doctor would want to see how i was getting on with it but i was told there was no need.

At the moment I feel all over the place and don't know whether to laugh or cry. I seem to be doing so much crying at the moment though the slightest little thing is upsetting me and I think it is just because I am so tired and in pain. Thank you all for your support it means a lot and I really appreciate it. sending you all hugs and kisses
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Re: Lack of Support can anyone help

Postby zappa20 » Wed Oct 30, 2013 4:11 am

julesleics wrote: The Rheumatology do not want to know and the GPs do not want to know. All I got offered the other day was we can send you to see a psychiatrist if you want but failing that we cannot do anything.


Does your Rheumatolgy Clinic operate a Fibro specialist nurse clinic. Thye amy be able to give you some support and help with getting physio etc. but after you do the course they expect you to continue on your won.

With regard to the seeing the Physchiatrist, don't dismiss this as an insult as it might be a good suggestion. Sometimes when Pain clinics can't offer patients any further help with pain, they offer to refer people on to the Pyschiatry consultant,. He can get you help with visualisation tecniques and cognitive behaviour therapy to try and help you find a way to cope with pain on daily basis.

Sounds silly but when I had terrible burning pain from fibro in my arms which felt as if someone was pouring boiling oil over them , just concentrating on shaking them about in different directions was enough to distract my brain from nerve pain messages enough to deal with it.
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Re: Lack of Support can anyone help

Postby whoami » Wed Oct 30, 2013 5:19 am

Zappo20... I totally agree with you about the physchiatrist.

People get defensive when that option is offered. People take the suggestion as an insult, that they are making this all up. I found my visits very helpful. They really helped me accept that I have yet another chronic illness with no cure. I also learned many ways in controlling my frustration, anger, denial and expectations.

Since my initial visits years ago, I have requested referrals myself. Living with fibro or any other chronic illness anyone is bound to become depressed.

My hubby and I both have a phsyciatrist we visit often. Between us we deal or dealt with.....bi polar, diabetic, spinal curvatures, IBS, depression, 32 trips to the operating room in 25 years, strokes and cancer, I could go on. The latest is dealing with my hubby having put his hand through a table saw and having damaged both right and left sides. Then there is fibro. We call illnesses as ours because they affect both of us.

We are no different than many other couples. Visiting a phsyciatrist has kept us together and as mentally healthy as possible.

With any chronic illness we have to accept any medical help offered.....treat the help with respect.....but most of all treat ourselves with enough respect that we help ourselves
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Re: Lack of Support can anyone help

Postby julesleics » Wed Oct 30, 2013 11:29 am

Thank you both for your replies. I must admit when the GP said I could see a psychiatrist my first thought was great he don't believe me and thinks it is in my mind. I thought a psychiatrist was more to do with prescribing tablets but some one else told me that the psychiatrist does that mainly but can also advice other help e.g. counselling.

I was having nerve root block injections to help with another problem and they really helped and to be honest with that under control I was able to manage my FM pain better if that makes sense but I have been given no reason as to why I can no longer have them. I used to have them done at the hospital and I can remember the gentleman who did them said so long as they were giving me relief and helping then there shouldn't be a problem. The first one I had gave me 6 months relief and the second one nine months and again the last one I had gave me around nine months. Hopefully though the pregablin will help.

You have certainly eased my mind regarding this so thank you.
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Re: Lack of Support can anyone help

Postby zappa20 » Thu Oct 31, 2013 2:52 am

julesleics wrote:Thank you both for your replies. I must admit when the GP said I could see a psychiatrist my first thought was great he don't believe me and thinks it is in my mind. I thought a psychiatrist was more to do with prescribing tablets but some one else told me that the psychiatrist does that mainly but can also advice other help e.g. counselling.

You have certainly eased my mind regarding this so thank you.


Glad it helped, it's a common misconception when this subject is brought up. Whoami has given a great explanation of how it works and how it can help.

Hope you give it a try and see how how you get on. I learned how to deal with the terrible burning , electric shock pain from diabetic sensory nerve damage( same as you can get in fibro) through distraction and other tecniques< Just understanding the apin was caused by nerves misfiring etc and the brain's interpretions over time helped a great deal. Couldn't be given or tolerate any of the medicatons they normally prescribe so it's just as well!!!!!!!! To be honest I think a lot of the drugs they prescribe for Fibro cause more side effects and problems than they solve.

The tecniques I learned stood me good stead when dealing with Fibro pain .
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Re: Lack of Support can anyone help

Postby FluppyPuffy » Thu Oct 31, 2013 9:55 am

I'm another who has had several rounds of therapy, counselling etc and have found it beneficial. Like zappa, I have learnt various techniques/strategies that have helped me get thru some pretty horrendous times as, whilst things were mostly pain orientated, I could also use them when things were happening in other areas of my life.
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