Why is it that there seem to be so few doctors who will a) look at the whole picture b) enable patients to try treatments other than those which they (the doctors) specifically agree with ?
These questions and others are the result of the first appointment I have had with my GP for eight months.
As I've said before he is a lovely chap: quiet, sensitive, (appears to be) listening, calm and friendly BUT he is not pro-active.
In all honesty I only went to see him because my Pensions Company have sent me the usual 6 monthly 'greeting card' asking how I'm getting on, will I return to work soon ? have I done any trampolining/ sky diving/ pot-holing ? do I intend to make a trip anytime soon to any part of Africa on a mercy mission for a charity and transporting myself there on a unicycle ? The answer to all the above is, of course, 'No.....I have not , cannot and its very unlikely I shall be involved in any such activities for the foreseeable future.' Still they have to ask and then when they have asked they double check that I'm not capable of work etc. etc. by asking my GP and asking him to complete another form --- which, if I ask ever so nicely, I can see before he sends it off....so I do because I want to know what's being said about me. Except that for the past 7 or 8 months I haven't bothered to see him because he's ineffectual and in the past 6 months I've felt like death so haven't been able to get to the surgery: all our conversations have been by phone. Every symptom I've had has been put down to M.E. or fatigue or anxiety.
Four days ago I finally went to see him and the form. I felt like death warmed up but I had to go no matter what (the form was going to be sent off the next day whatever happened). The form was fine(ish) ..he hates them as much as me and puts as little information as possible. The meeting was warm and friendly as usual but nothing ever shifts. We never move beyond the third place on the game's board. That's why I rarely see him. It's like a stale relationship where there's nothing left to say.
I went through the past 6 months -- so he knew what its really been like and can put it on the form --- and told him all the gory details. I asked him about the recommendations of Dr Myhill (B12 injections, more thyroid tests), the hypoglycemia ---which he insists is not hypoglycemia but fatigue and weakness --- the upset stomach and about all the talk about M.E. maybe being related to health of the gut and the place of probiotics.
Everything was met with a negative response: 'No', 'It's not been proven', 'etc. etc..
All I was offered was SSRIs (anti-depressants) - the same ones I weaned myself off last year.
I was offered (and reluctanatly accepted) them eight years ago and I'm being offered them again now because they apparently help with IBS, sleep patterns, anxiety: so not especially because of any depression. Although it has to be said that after the past 6 months I've got a bloody right o be depressed ---well more pissed off really and angry and frustrated. Still the pills are his answer --- to everything.
'It's all we've got' he says.
It's all we've got. Is it ? What about all the other stuff I just mentioned that you've just dismissed ? What about taking a chance to see if any of them might make me a bit better. I can't access any of those treatments without a GP's agreement so I'm stuck ......and I'm sick of it.
The last six months have been a total wash out. I'm nearly as far back as I was eight years ago.
Every day is a struggle and when I try to get out and about it's hell. Every trip, every journey is torture because moving and traveling is so hard for me. My memory is shot. My ability to talk for any length of time, to be creative (even if it's only bloody sock monkeys and fairy cakes) is gone and the blood sugar problems , orthostatic intolerance, fatigue, problems with sight and hearing continue and I'm sick of it. I'm even too unwell to get to my Reiki healer or to the osteopath. I've given up so much these past eight years and spent so much money on vitamins, herbs, consultations and I'm still stuck here ploughing on with no real medical support. It's all hit and miss.
Maybe the slow decline over the past nine months is down to lack of Sertraline. Maybe if I start taking them again it'll all come right (yeah right !!!) or maybe it's coincidence and I'll stay the same as I am until fate decides I should get a bit better and then I'll be on bloody anti-depressants as well.......but what other option do I have when there are no other doctors about who have a more adventurous approach. I've asked around about other GPs in the practice and other surgeries too and nobody knows of anyone better. So it's better the devil.......and I fell I should just roll over and take the tablets like a good patient. Maybe he's right
In the meantime there is talk that there is a specific probiotic which may be very helpful to people with M.E. (see links in last post) : only available in America but, as it's my birthday soon, I have decided to spend $77 on myself and have some shipped over in the hope that it may move things on a tad.
These questions and others are the result of the first appointment I have had with my GP for eight months.
As I've said before he is a lovely chap: quiet, sensitive, (appears to be) listening, calm and friendly BUT he is not pro-active.
In all honesty I only went to see him because my Pensions Company have sent me the usual 6 monthly 'greeting card' asking how I'm getting on, will I return to work soon ? have I done any trampolining/ sky diving/ pot-holing ? do I intend to make a trip anytime soon to any part of Africa on a mercy mission for a charity and transporting myself there on a unicycle ? The answer to all the above is, of course, 'No.....I have not , cannot and its very unlikely I shall be involved in any such activities for the foreseeable future.' Still they have to ask and then when they have asked they double check that I'm not capable of work etc. etc. by asking my GP and asking him to complete another form --- which, if I ask ever so nicely, I can see before he sends it off....so I do because I want to know what's being said about me. Except that for the past 7 or 8 months I haven't bothered to see him because he's ineffectual and in the past 6 months I've felt like death so haven't been able to get to the surgery: all our conversations have been by phone. Every symptom I've had has been put down to M.E. or fatigue or anxiety.
Four days ago I finally went to see him and the form. I felt like death warmed up but I had to go no matter what (the form was going to be sent off the next day whatever happened). The form was fine(ish) ..he hates them as much as me and puts as little information as possible. The meeting was warm and friendly as usual but nothing ever shifts. We never move beyond the third place on the game's board. That's why I rarely see him. It's like a stale relationship where there's nothing left to say.
I went through the past 6 months -- so he knew what its really been like and can put it on the form --- and told him all the gory details. I asked him about the recommendations of Dr Myhill (B12 injections, more thyroid tests), the hypoglycemia ---which he insists is not hypoglycemia but fatigue and weakness --- the upset stomach and about all the talk about M.E. maybe being related to health of the gut and the place of probiotics.
Everything was met with a negative response: 'No', 'It's not been proven', 'etc. etc..
All I was offered was SSRIs (anti-depressants) - the same ones I weaned myself off last year.
I was offered (and reluctanatly accepted) them eight years ago and I'm being offered them again now because they apparently help with IBS, sleep patterns, anxiety: so not especially because of any depression. Although it has to be said that after the past 6 months I've got a bloody right o be depressed ---well more pissed off really and angry and frustrated. Still the pills are his answer --- to everything.
'It's all we've got' he says.
It's all we've got. Is it ? What about all the other stuff I just mentioned that you've just dismissed ? What about taking a chance to see if any of them might make me a bit better. I can't access any of those treatments without a GP's agreement so I'm stuck ......and I'm sick of it.
The last six months have been a total wash out. I'm nearly as far back as I was eight years ago.
Every day is a struggle and when I try to get out and about it's hell. Every trip, every journey is torture because moving and traveling is so hard for me. My memory is shot. My ability to talk for any length of time, to be creative (even if it's only bloody sock monkeys and fairy cakes) is gone and the blood sugar problems , orthostatic intolerance, fatigue, problems with sight and hearing continue and I'm sick of it. I'm even too unwell to get to my Reiki healer or to the osteopath. I've given up so much these past eight years and spent so much money on vitamins, herbs, consultations and I'm still stuck here ploughing on with no real medical support. It's all hit and miss.
Maybe the slow decline over the past nine months is down to lack of Sertraline. Maybe if I start taking them again it'll all come right (yeah right !!!) or maybe it's coincidence and I'll stay the same as I am until fate decides I should get a bit better and then I'll be on bloody anti-depressants as well.......but what other option do I have when there are no other doctors about who have a more adventurous approach. I've asked around about other GPs in the practice and other surgeries too and nobody knows of anyone better. So it's better the devil.......and I fell I should just roll over and take the tablets like a good patient. Maybe he's right
In the meantime there is talk that there is a specific probiotic which may be very helpful to people with M.E. (see links in last post) : only available in America but, as it's my birthday soon, I have decided to spend $77 on myself and have some shipped over in the hope that it may move things on a tad.
20 comments:
dear lovely Cusp, how I feel for you, and I am at a loss for words. I am glad you are giving utterance to how you feel and how it has been for you, and I find myself nodding in recognition at many of the symptoms you mention, though I do not have IBS. The past year has been bloody awful in Signsville too, and I have been casting about for clues. But I do not have young children to care for as you have.
Every so often something new comes along and one tries it - why not? Even if it helps a little, or only for a while.
Love from me and the beautiful Poesie, your lovely creation. Hoping for better times.
Oh Cusp. Your post really touched me.
I hope you dont get fake drugs from America, that you have a site you can trust in. If you are not sure I can ask an american friend if she can recommend a website.
I am sure you have this under control and I should keep my beak out!
Take care Cusp. xx.
I'm sorry you're having such a hard time of it lately. Fingers crossed for some relief in the next few months.
My old GP once said - when I asked the great Why? about some new symptom or other - "Oh I'm afraid we doctors only know about 40% of how the body works - most of it is a complete mystery!"
But I guess at least he was honest - and he was a pretty decent doctor, all in all. It just wasn't quite what I wanted to hear!
Hi cusp,
I don't know what to say, except hang in there! I do know how scary and distressing it is when you feel like shit and nobody can understand why or help at all. At least some progress seems to be occurring in some parts of the world and eventually it HAS to be accepted in the UK.
As for the SSRIs, you have to decide for yourself, but I thought I would tell you that I do take them, as does my husband (he has CFS too). I've never had a period without them because they are so awful to come off, but he has by mistake at times. For him, he finds he suddenly feels absolutely terrible and then he realizes he hasn't been taking his SSRIs, so he starts again and improves. Our dr recommends we view them as our serotonin supplementers rather than anti-depressants, as he says it's nothing to do with a depressive illness, but rather a lack of serotonin which has far more widespread effects. Warmest wishes from chilliest Brisbane, A.
I have much sympathy since I've had similar experiences with GPs. There is plenty that can be done for people with CFS. In the first place you can change your doc if you aren't happy. Secondly, see if there's an ME clinic near you. If you can get referred to an Occupational Therapist, they will help you with a resting and pacing programme. Maybe you've already done this? If you haven't I highly recommend it. I got 50% of my life back. If there's no ME clinic ask for a physio referral.
I'm on a very low dose SSRI after some months trying to reduce, but I'm thinking of going back up again as it really does help with pain and energy.
Again, much sympathy. And all the best.
Not a lot I can say really, other than send you some cyber hugs.
(((((Cusp)))))
My GP is much the same, hardly ever see him unless have a form to fill in. At least now I'm "retired" I'll never have to fill in another IB50! I'm counting my blessings! ;-)
He has been very good about referring me on when I get new symptoms. Neurologist when the vertigo started and I kept falling over, and last year to a cardiologist when I began getting intermittent chest pain. Cardiologist suggested doing a chemical stress test, but agreed we'd wait and see how things went for a while. Since I saw him I haven't had the pain, so guess it was a combination of grief and stress.
Hope you manage to import the probiotics and that they help. I've given up on trying stuff, though do have terrible cravings for garlic most of the time, so indulge! ;-)
Hugs from Liverpool
Oh my dears you really don't know how much it means that you've all responded to such a pity-party misery guts post. It really does make a difference that I know I am speaking to people who know what I mean and are willing to share their experiences. This bloody illness can make you feel so isolated and miserable.
I'm very interested that some of you are also on Sertraline and found it helpful. It wasnmy own stubborness and sense of independence tah made me give them up last July. I have more or less decided I should try it aagin. I should have started on Monday but since then I've been clobbered with this damned virus/cold thing so couldn't cope with that, the M.E. and the potential wobbles of going back on Sertaline. I shall start them asap
Kahless my dear, your concern is mine too but I could only find one website (Quick2You.com) that sold them (Align)so I've ordered and they shoud arrive soon. However, I am worried about them being bona fide so if your chum could check them out that would be great.
I can't remember if we have talked about this before, but am wondering what you (and others here) think about St Johns Wort re SSRI. I have taken it - and sometimes I feel it has helped, at other times not. Kira used to produce low dose tablets but they only do the one-a-day ones now, which are too strong for me. The only SSRI medication I have tried has been Prozac and Effexor, both of which made me feel unspeakably awful, so I am scared to try anything else. But on the other hand, I listen to what is being said, and wonder. As one does.
Sounds familiar.
I don't know if this Align stuff is the way to go or not but I did stumble on someone selling them on ebay.co.uk From the US but as there's feedback you might get an impression of whether they are good to do business with?
http://tinyurl.com/l6jzpo
I wonder if a month would be enough to indicate if it works or not ... Hmmm ... Or is it recommended because it's made by Proctor and Gamble who have the money to get good market representation and be included in trials? Ugh.
I'd be interested to know how you get on if you do treat yourself. I hope it really does help.
Dear Signs I tried St Johns Wort before the Sertraline 8 years ago. First I tried the stuff from Holland and Barrett and then more pure and specifically tailored from my herbalist (who knows her onions ...and her herbs ;0) ) I have to say that it made little difference to how I felt emotionally or physically. On Sertraline I have to admit that, although my world wasn't rocking, by and large I did have some improvement and I was able to cope with all sorts of stuff in the 7 years I took it: father, mother-in-law and mother all dying, car accident, major fall when I ripped out some finger nails and life's other little ups and downs. I felt more 'me' when I was on them and they did 'iron out the bumps' as my GP said at the time. The only reason I decided to come off was because I was worried about long-term use and, basically, I hate taking prescription drugs. I felt that my body was in enough of a state without including synthetic chemicals to stimulate my seratonin levels. I also felt last year that life was passing me by and I was bit too laid back. However, since coming off I haven't really achieved any more and in fact felt so (M.E.)bad and so affected by other stuff that I've achieved less. Maybe I was wrong last year and need sertraline.
Ah Rachel, Thanks for dropping by. Yes I saw that Align on Ebay too but I wasn't sure about it. I've ordered the stuff from US now and not sure about that either. I could have ordered direct from Amazon.com and had it sent here but too late now. We'll see.
Align is made by P&G but the recommendations seem to come more from proper medical research (did you follow the links from my previous post ?) and the fact that Align has a very specific bifidus that's good for IBS and more importantly people with M.E. and FM. Mind you it's more than possible that P&G have 'leverage' on all sorts of doctors and research to say nice things so who knows. Don't know why it's so hard to buy it here. Biocare do something similar but it's not exactly the same 'bug' in their probiotic
I'm sitting here bleary and tired while it's sunny outside and the world whorls by. I can relate to your confusion as to what else to try, your frustration with your doc and your anger with your restricted and difficult body. I don't see this post as a pity party! It's important to be honest and to let some of this frustration and pain out. It helps to write it and it helps other to feel that they are not alone.
I've spent a lot of money over the years and have not found relief. I know it's hard to keep an open mind (and wallet). I hope the pro-biotics help at least a bit. I do wonder if their pro-biotic is so different than a good one you could get there. There is a lot of buzz around pro-biotics these days and a lot of companies are saying that theirs is the best. A lot of companies are copyrighting the names of the little buggers and convincing us that they are the best. Danon yogurt, for example, has a different name for it's pro-biotics in almost every country depending on what might convince the consumers. I wonder what a good naturopath would say about the type of bacteria one should ingest. You just might be able to find something very good at your local stores.
FYI: my doc and my vet both agree that taking a pro-biotic 25 minutes after eating seems to give it the best chance of getting into the right place in your intestine.
If you go back on the SSRI's and are concerned about toxicity, maybe you could talk to a naturopath about doing a liver cleanse once a year or something like that. If they help you out, perhaps yo can go back on them and also give your body a little added help with clearing them out of your system. I am rather anti-medication, but if I found something that helped (I haven't), I think I would take it and grab a little bit more of life and then try to deal with any possible long-term effects.
I hear you, sister, and I know you're working very hard to do everything you can to get better. I wish you had a better GOP by your side. But at least we're here, standing by... wishing you strength and improved health.
Oh (((Cusp)), I wish i did not know what you were talking about, but I do. I am sending cyber hugs and good wishes your way...
I saw it on Amazon.com but they won't dispatch to UK. Third party sellers will but think postage will be more than the people you found anyway.
Hope you manage to not get slapped with the custom fees.
Yes I followed the links but brain not really following all the detail. I also did a bit of searching and fuzzy reading too.
I am tempted to give it a whirl. But I also still have to try my Kreb cycle suppliments experiment (following some kind advice on my blog via comments). It will cost about the same.
Then I think is it worth chucking more money at suppliments? Sigh. I just want to feel a bit better. I suspect there are no easy solutions - but what if there are?! Ah the niggly doubt never seems to go away - not when sitting and waiting for recovery that may never come is the alternative.
I would be very interested to know how you find the align. Well done for making the decision to give it a go. I hope it gives a definite result one way or the other in the short-term so you know whether it is worth it again...
As for the sertraline, at least if you try it again and feel better you will know it is worth it for you and however worrying it is to be taking drugs long term, it sounds like it is worth it if it improves quality of life now. Life below a certain level of functioning is just so hard, there is no choice if you can find something to actually help... i hope it does.
Your post is not a pity-party misery guts post - it is just telling it like it is and makes valid points... it is so familiar to me (and other commenters it seems) and important to share and realise we are not alone in this nightmare.
The NHS attitude towards us is so frustrating it makes me angry that things are not being pushed through and changed so that GPs are free and willing to support us in at least trying things... some of the things you list are hardly dangerous/controversial! GRRR it is ridiculous.
I hope both things bring some relief - thinking of you.
Reading this really saddens me Cusp. I am so sorry that things haven't improved for you and that your GP isn't much help to you other than offering drugs that you don't feel comfortable taking.
You have had some wonderful advice in replies to your post I'm afraid that I don't have much to add that hasn't already been said. I can only let you know that although it may feel like it, that you are not alone. If you feel that you would like to email me at anytime just to vent or chat whatever, you are most welcome. I may not be of much help but sometimes just getting things off your chest can be beneficial.
Actually, I find myself in a similar position to you right now. I have been pretty darn miserable with no sign of a let up in bizarre symptoms and pain that I too am considering caving to the pressure and trying some form of SSRI or an anti-inflammatory like Celebrex. I agree with you, I detest taking drugs and feel that my body is screwy enough without pumping more rubbish into it. It worries me that I react so badly to drugs and in turn the medication that I take to help can cause all kinds of secondary problems.
I think that like you I am searching not so much for a cure or total relief but more just some let up in pain and symptoms so that I can at the very least try to live my life without being so damn miserable all of the time.
I guess it is a quality of life issue and how much we want to be able to go about our daily business without absolutely everything being such a huge task. I saw my GP the other day for tummy and bowel issues that I was pretty sure were FMS related but I just wanted clarification that it wasn't anything else and he tried to push drugs onto me and when I explained how I felt about taking them he just raised his eyebrows and pretty much said, well what do you expect.
I'm really in a quandary as to what to do and unfortunately he is of not much help to me.
Blimey...I've waffled a bit here... hope you haven't nodded off at the keyboard!
Please Cusp, let me know how you are going and remember that I am just an email away if you feel the need.
((hugs))
Cusp.
Came across your blog and felt the similarities, even though I'd rather not.
Must be Specialist and G.P. week. I had a similar experience with the Specialist, who more or less said I have no choice but to go on the Marshall Protocol again (Yuk...Yuk...and more Yuk). Then I visited the G.P. and of course she agrees with him.She actually said that I'm sort of like a pioneer with this illness, so really everything suggested is trial and error maybe...
Great.
So after feeling even more depleted then usual and lot's of crying, I have started the MP and have even more symptoms than normal.
This time though, I feel more positive about it. Also I did try VitB injections and they did work for awhile.That's the big thing with my body, is that most treatments only work short term.
Still it helps in some way for me to know that the support of others is just a keyboard away.
In Love.
Rose
Wow what a lot of support. You really are so kind and it makes a terrific difference.
Hey Donimo, well I am only trying these particular probiotics ecause they are supposed to be especially good for PWME or FM but I am rather worried about having ordered them over the Web...did it in haste and frustration. Can you get 'Align' in Canada ? Heard any good reports ? It's over a week since I saw the GP and I still haven't begun the SSRIs. Just cannot make up my mind about what to do this time. Liver cleanses are a good idea. My herbalist is always recommending them. I did do one after coming off Lustral/Zoloft. I'll keep you posted and thank you for leaving a comment when I know you don't feel that great yourself.
Hey Ashy, thanks for your comments. As you can see (above) I'm still so undecided about teh Sertraline. One minute I think it would be good to try and push past where I am snce trying to drag myslef form the relapse and another bit of me thinks I don't really need them at the moment BUT I do have the 7 week summer school holidays about to descend (next week) and we should start having builders in for 3 months from August/September so maybe i should get those drugs down me fast LOL !!!
Willow ..thanks, my dear...I can feel the hugs from here ;0)
Azirca...what a dear friend you are. I hear what you're saying and know you need some comfort at the moment too. It definitely is about quality of life and the fact that every damned thing is such a struggle..even the simplest things. Every thing has to be planned and plotted. I haven't even managed to get back to the doctors for the blood tests he ordered...just not up to getting there and it's only 10-15 minutes drive. I am in the process of looking at another doctor in a different Practice and have just spoken to a friend who already goes there.
Rose. Thanks for dropping by. Good to see you here. Sorry you too are in such a predicament: seesm to be the way for us PWME and PWFM. Interesting to know about the VitB injections.
Hi
I love your blog and are following by rss. I would like it very much if you would follow my blog too: www.tiredofme.com
Hi Hege. Thank you for the compliment. I've visited your blog before. It's very stylish -- love the images ;0)
Where abouts are you in Norway ? Went there as a child and I'd love to go back one day
I realise this is an old post- I still just wanted to say hang in there and I'm thinking of you. Fingers crossed that the XMRV news will change things for the better! Though it's scary news in itself... Take care.
Rabbit xxx
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