Help Needed

Hi I don't want to sound all pitying or Doctor bashing and I am sorry if it comes across that way. I have Fibro, Agoraphobia and every nasty little thing that comes along with these. For the past 6 days I have also had the pleasure of dealing with hives, from top to toe, and I don't know where from. I am not able to take medication due to a phobia(I will explain better later), apart from applying creams, and I think that this is where the main problem lies. I read on here daily that people are being offered this test and that test, or MRI or this therapy and quite frankly lots of help. All that my Doctor wants to do is give me drugs. My experiences with him include asking for help with concerns over my weight, I did not have the chance to say if I was losing or gaining weight, he said "I am going to gain weight as I am less mobile". In 2002 I had a lump come up inside my cheek, I had it checked and the specialist was a bit puzzled and said live with it for as long as I can, it might go away on its own, or come back if it gets worse. It got worse so in 2011 went back to docs and asked for a referral after reminding him of the previous situation with it and he said "it's not cancer you know" (My Mum had been diagnosed earlier that year with cancer) He also on 2 separate occasions forgot to do the referral letters 1 being to the breast clinic. Hence I haven't been back to him now for nearly 3 years. My phobia for medication comes about in 1993 because a different doctor I went to for help with a sleeping problem, after recently moving, said that I needed anti-depressants and I said no I just wanted help getting a sleep pattern back. He said ok and gave me 30 days of medication. I had a sleep pattern back and at the end of the 30 days the tablets ran out. 2 days later I was hiding behind my bedroom door really scared that I was going to harm my children. I phoned the Docs and they said that I should never have just stopped taking the ANTI-DEPRESSANTS. The tablet was a tablet that was a few years later they banned it in the states for having the highest suicide and self harming rate. Sorry for going on and I will understand if nobody has read it all. Am I just being to sensitive or should I be getting more help.

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30 Replies

  • You definitely need more help and information in quite a few areas as far as I can tell! Can you change Dr's? I know from reading this site that a lot of people have problems with their own Dr and have asked for one that is understanding of this illness and all the other bits that go with it!! Sometimes you have to grab the bull by the horns and "go for it" I often write down what I need to say as I get myself in a bit of a state trying to explain things! Hope this helps a little! Much

  • Thank you Ninjananna for replying sorry for the long vent but sometimes just doing that helps doesn't it :o)

  • Thank you Ninjananna for replying sorry for the long vent but sometimes just doing that helps doesn't it :o)

  • Thank you Ninjananna for replying sorry for the long vent but sometimes just doing that helps doesn't it :o)

  • Hi there gracesgrandma

    It sounds like you have a lot going on and to deal with is there any chance that you could change GP?

    It must be difficult being agoraphobic and trying to sort these things out, does your GP come out to see you? If not, is it possible for them to do so, as I personally think it may help you to be more relaxed when discussing your problems.

    I also wondered if you'd tried complementary treatments of course you would need to discuss these with your GP before embarking on anything new. Here's the link to the Fact sheet on FibroAction website

    Also there is this article which discusses the issue -Dealing with Doctors which is also from the FibroAction website

    I don't really know what else to suggest but I hope these help you :) I'm not surprised that you're anxious if you don't like your GP and in my opinion I wouldn't say you were being over-sensitive but more wary and cautious :)

    Wishing relief and wellness :) xxxsianxxx :)

  • Thanks zeb73 for the reply I will look at your links and thanks for the suggestions. I know I am my worst enemy sometimes but when it takes so long to get a diagnosis for Fibro you are treated as a Hypochondriac and start to believe it. My docs don't even like you going to the surgery for appointments so how you would get a home visit I am not quite sure :o) Thanks again xx

  • You're welcome, it's a crazy system, good luck and let me know how you get on :) xx

  • Hi love know how you feel im getting nowhere with my docs n family dont believe me big hugsssxxx

  • Hi gracesgrandma, I just had to post a reply to u. I wish I could give u this hug, ((hug)) in person, I am so sorry to hear how badly u have been treated. To have to suffer ur health probs without gp support is horrendous. Lots of loving, positive, healing thoughts to you & big, gentle hugs, Julie xxx

  • Hi Julie63 Your message has made me cry. Good tears and sad tears because a total stranger sending such lovely thoughts. I didn't quite realise how much I have been holding things in. Lovely big hugs back to you.

  • Hi there, oh dear you have had a lot of rubbish thrown at you haven't you :o I also think it might be a good idea, if you are able to, to change your GP, it sounds very much like he has little if any understanding of fibro at all. I remember the outrage about the antidepressant and it's horrendous side effects, thank goodness you did stop taking it and that you recognised the potential for harm it was creating in you - well done you !!

    I'm sorry it has created such a phobia of the medications which could possibly help you, but it is understandable, I think it might help if you were able to have someone come to see you at home for counselling and possibly CBT to help you overcome your fears. Zeb has also given you good links to information which might help you.

    I am however pleases to hear that you can deal with applying the cream to help with your hives, that must be so horrid for you, and I really hope that the cream helps to heal them up very quickly.

    Know that you can come here any time you like and we can help you in any way we can, but getting a decent doctor with a good understanding of your problems is paramount, and I really hope you can achieve that. It may be hard, but you have the backing of all of us here.

    I'm sending you lots of positive healing vibes your way :-)

    Foggy x

  • Hi Fibrofoggiest thank you for your reply. It really does help knowing that people really do understand :o) x

  • We understand and we do care, that matters a lot to all of us, so we want to take care of one of our own, which you are :-). Btw do call me foggy, everyone else does :-)

    Foggy x

  • NO. You are not being sensitive. That's a really sad story that should not happen these days. Listening to our politicians you'd think stuff like that was stopped years ago - but Staffs is still going on, isn't it? Agree with Foggy and Sian has given you plenty of info. The option is yours, Daunting as it might be to change GP it looks like it would be best in the long run. Gentle hugs

  • Thank you Fenbadger I think that we are all to hard on ourselves and bottle to much.xx

  • Yup. Power to you. Cheesy grins. :D

  • Research all available doctors in your area that you could possibly travel to if only once. I know agoraphobia will make that incredibly difficult for you. Muster all the strength and will power that you can and go and sign on with the one of your choice asap. Don't pull any punches about your experiences with this one and ask if they have a doctor who specializes in fibro etc. You need never see this one again and he will receive the feedback that you have given about him but not in an official way. Doctors are well paid to look after us and if they are failing in that duty of care they need a good poke back in the right direction. After you have filled in the forms your part is over and you can ask for home visits etc

  • Thank you whoaminow I think you are right and he shouldn't be getting away with it. I know a few other people who have had problems. xx

  • I cannot thank everyone enough for all the lovely replies. I know that I bury my head in the sand sometimes for fear of confrontation but now I know that it is not my fault I have to confront this once and for all. You all will never fully understand how your replying is going to make such a difference for me. Thank You xxxxxxx

  • You do know of course that we will be waiting for you to come back on and tell us all. Good luck xx

  • Yep, we are all here, hoping that you get some good news from a gp or hospital consultant for once & will be back to let us know, Julie xxx

    (You're never a stranger when you're on here - you're amongst friends)

  • Don't we all sometimes :P However you are you. We're all different. Can you get someone to go with you? Make it a trip out or something? Kung Fu grasshoppers on the way for support.

  • Hi gracesgrandma

    I am so sorry to read that you are suffering in this way at the present time, and I sincerely hope that you are feeling as well as you possibly can be today?

    I have been giving some thought to what you describe as hives, and I was wondering what creams you use? and how much? and how often? I remember somebody I once knew, and they were using creams on their skin quite a lot. It turned out that they were blocking their pores, and as a result, their skin could not breathe and they were picking up infections. I do not know if this is the sort of thing that you mean? But either way you should really get it checked out?

    I was wondering if there was a GP at your surgery that you haven't seen? Somebody different that you can have a clean slate with and hopefully get some resolution and relief to your problems?

    I want to wish you all the best and please keep us all up to date with how you get on?

    All my hopes and dreams for you.

    Ken x

  • Thanks The Author. The cream is dermacool from the Doctors. Because of all the sensitivities with Fibro I watch what I eat, drink and touch so as to avoid any reactions. That is why I am concerned at what has caused this. Until I decide whether to change the docs i think that I will have to pick another 1 so fingers crossed. x

  • Good luck with that, it can't be easy if your skin is so sensitive? I genuinely hope that the next cream works well for you

    Ken x

  • Hi gracesgrandma , sorry you are going thru a horrid time at the moment, it does sound as tho you need to change your GP but it's not aways that easy is it, as for te lump indie you mouth cheek, I've had one fir some time, I'm now biting it so doc as sent me for investigation at Hosp on the 18 th March, hope the cream helps you and you manage to get some relief, my thoughts are with you, you sound o low, take care sending you a gentle hug and. Huge handful of sunshine....Dee xx

  • Thanks for the reply Cookie72. I hope all goes well for you on the 18th. It is more worrying because I now have another 1 on the other side, but that said, I am generally a lumpy person :o) xx

  • I'm so sorry to hear that gracesgrandma , please try not to worry too much I'm sure everything will be ok, you take care will let you know what they say, gentl hugs..Dee xx

  • Hi Gracesgrama, Bless you, you certainly do need help and as soon as possible too. It is difficult enough living with Fibro without all the other "rubbish" you have had to contend with! My heart goes to out to you! I can empathise with you re Agoraphobia, I had a spell in Intensive Care and Hospital for a month in 2012 and since then I hav"nt been able to go out without my husband. I hate the fact of loosing independence, not confident to drive ect.

    Have you thought about changing your Gp, to a more sympathetic one, who understands the complexities of all your conditions? It is your right to change Gp"s!?

    I have mental health problems, anxiety neurosis, chronic depression, panic attacks. I have a Community Psychiatric Nurse, who visits me @ home and wonderful Psychiatrist which really helps.

    There is nothing to be ashamed of having Mental Health Issues, I used to work @ a Mental Health Hospital, little did I know then I would end up as a patient myself!

    Perhaps you could get a referal to the Psychiatric Services. You can actually refer yourself, by just getting in contact with nearest Psychiatric Team/Hospital and ask to speak to the "Duty Officer" for the day in hand. Especially if you are experiencing difficulties with anxiety,agoraphobia ect. You can speak to them and usually they take you on, or there is a" Psychiatric Crisis Team".(Please don"t think I am "Labelling" you mentally ill, I would hate to upset you in any way but you do have so much to contend with) available 24/7 if things get too much for you

    The hives can be caused from an Allergic Reaction, either Meds or food allergies, I am no expert but my son has Anaphyllanxic Shock, (known as peanut allergy) but can be allergic to almost any thing! Hives over your body can be stress related too!

    I am really sorry to hear you are having such a tough time of it @ the moment. Remember that Doctors are only human and they can and do make mistakes. We have found this out the hard way, when I fought for a diagnosis on my eldest son, only to be told "I was an over-anxious mother, he did"n like school" ect.

    Every single Dr/Consultant we saw was wrong and when he was finally Diagnosed in London after years back and forth Dr"s. He was diagnosed with a Rare, Genetic, Progressive, Incurable, Fatal Syndrome/Dystrophy. He ended up in a Wheelchair by the time he was 18 years old!

    So please do not be afraid to Question your doctor, take someone with you if you hav"nt got the confidence to speak up for yourself (I hav"nt @ mo. so my husband does all the talking).

    I sincerely hope you can @ least get on the right road for help, you do so desperately need?

    There us always someone on this wonderful Site to help you, I have found it a tremendous help and support! Good Luck!!

    In my thoughts and Prayers

    Sending you positive healing energies,

    Take Care

    God bless Lynn X

  • Hi bettybaby I have pm you

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