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Bust up with doctors!

Tiacoyle99 profile image
43 Replies

I just had a phone call with a different doctor who is telling me now that nothing will ever help me with my fibromyalgia, I told him gabapentin isn’t helping me anymore he told me to stop them then made out I was just phoning for pain killers I told him I’m not able to sleep I’m in agony everything my anxiety is terrible one doctors prescribing me pain killers and trying different tablets and the others telling me basically get on with it I was so mad on the phone I’m not looking for pain killers I’m trying to get them to understand how I’m feeling I’m 21 and struggling and he decides he’ll be so arrogant with me. I thought my consolation was over with so I hung up the phone after saying goodbye and I received a text message from my practise saying hanging up on GP is offensive and if it happens again I will be kicked out my practise. I’m so annoyed I feel like the doctor just doesn’t like me and I’ve just to suffer

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Yassytina profile image
YassytinaFMA UK Volunteer

You proberly didn t mean too but out of sheer frustration in asking for the right help, I would get a close family member to ring back with you for some back up, they normally will listen to you and perhaps speak with your next of kin say if you give them the okay, just because you are 21 and young dosent mean you can be fobbed off, duty of care and trial and error in order to get a meds that suits you. Am I right in thinking medication has to be tapered off and not stopped suddenly just a thought not sure on gapapentin ? also has having suffered with bad anxiety myself it should really be addressed , you are the patient asking for help, hope you can get the help needed , take care xx

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

I would write a letter to the practice manager and keep it professional and polite. Acknowledge your frustration at needing help and the different approaches from the doctors. Explain the hanging up but be honest as it will be recorded. Apologise if it came across the wrong way. Again, your trying to be polite and professional to get your point across.

Maybe do a log of how your dealing with things for a week with brief notes and a pain scale of 1 - 10. Include it and be open about wanting to try things to improve your situation.

All the best

LoneEra profile image
LoneEra

Oh Tia, sorry to hear this. It’s so frustrating. I think writing to them as others have suggested is a good idea.

I would make it clear that your mental and physical health are suffering - and you need help. Personally, I would ask for a referral to the pain management clinic and to a physiotherapist.

I’d also ask for another conversation to review your medication. As has been said, Gabapentin should be tapered off - not stopped dead. And there are other meds that could be tried. Refer your GP to the NHS website if need be! nhs.uk/conditions/fibromyal...

If you continue to get nowhere with this GP practice, though, I would consider moving to another one. You deserve better care than you are getting at the moment.

Wishing you well xx

Inthepark profile image
Inthepark

I had the same problem with my doctor I changed to a different surgery doctors like that don’t understand Fibro and I think they feel that you know more than they do and they don’t like that, change to a different surgery you will never get anywhere if you don’t .Hope you find one that’s willing to listen and help .

think you really should consider adding some ambroxol for fibro pain relief, it really works for nerve pain, here is some research on it, you can find it on Amazon & other places, helps my shoulder nerve pain from PD.

fibromyalgianewstoday.com/2...

pubmed.ncbi.nlm.nih.gov/284...

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

that's the same study referenced twice and its a pilot. Not heard of any large scale trials and to be honest apart from yourself I have not heard of it before. I do see that you seem to be an advocate of it on here and on the Parkinson forum.

in reply to desquinn

yes I am, because it works for me. Ambroxol has some potentially life changing uses for serious conditions like PD & Fibro. Here's a summary below on recent research on Ambroxol for Fibromyalgia & Trigeminal Neuralgia. The fact that you have not heard of it before is not surprising to me (my neurologists had not heard of it either, but they have now!, as it has been off patent for decades as a cough medicine, is OTC in many countries, and of little value for large drug companies to do further research when they are working on or have their own patented and branded products for such conditions, let alone promote as a generic to the medical community). Here's the point for those suffering from severe pain from fibromyalgia or neuralgia (neuropathic pain), in small studies it has been found to work to mitigate pain, is pretty safe (more on that below as well), and may be the only currently available treatment option to address all aspects of such pain, including Fibro existing as irritable bowel syndrome and chronic bladder pain . If you wish to wait to try it until there are larger scale studies to support it you can certainly do so, but if you need something that could potentially really help you with your nerve pain now, Ambroxol is an option that works for me, and you can find it now, not years from now. Why live with such agony when you can do something about it?

Recent Research

"Ambroxol: a wonder drug for neuropathic pain?

Fibromyalgia

2017 saw the publication of two studies into the effect of ambroxol on the symptoms of Fibromyalgia.

The first study involved 25 patients taking ambroxol orally, three times a day for a month. This was a very small-scale, short-term pilot study and researchers warned additionally that the open nature of the study did not allow them to rule out the possible role of the placebo effect in the results. However, the drug was said to be “well tolerated” and “side effects were minor”. The conclusion was that “the use of ambroxol was associated to decreased fibromyalgia pain and improved fibromyalgia symptoms.”

In the second study, which was entitled “Ambroxol for the treatment of fibromyalgia: science or fiction?”, the authors concluded that “fibromyalgia treatment with ambroxol should be systematically investigated, since this compound is the only treatment option used thus far that has the potential to address not just individual but all of the aforementioned aspects of pain.”

That’s quite a statement! However, they were swift to stress that it’s still early days and that “at this point, the evidence base for ambroxol is currently not strong enough for clinical recommendation.”

Trigeminal Neuralgia

January 2019 saw the publication of another small-scale study involving the use of ambroxol as a topical cream. This time, “clinically significant pain relief” was seen within 15 to 30 minutes in patients suffering Trigeminal Neuralgia who applied the cream following a pain flare. Pain relief was said to last between 4 and 6 hours and “in one case pain was eliminated after 1 week.”

In fact, so impressed were the researchers that they concluded “In view of the positive side effect profile, topical ambroxol for patients with such a highly impaired quality of life should be investigated further as a matter of urgency.”

How does ambroxol work?

It is thought that ambroxol’s analgesic properties arise from its action as a potent sodium and calcium channel blocker. It is these channels within the peripheral nervous system that carry pain signals. Other studies also note its anti-inflammatory properties.

Preliminary conclusions

Clearly, researchers in all of the small-scale studies published so far believe that ambroxol shows real promise as a treatment for the symptoms of a variety of types of neuropathic pain. However, the reality is that the current absence of large-scale clinical trials means that it is years from reaching the market. This is a huge shame because, as far as can be determined currently, unlike so many other drugs used in the treatment of neuropathic pain, ambroxol seems to be both non-addictive and to have very few side-effects. An added benefit is that, in certain situations, it can be applied topically.

Fortunately, at the very least there does seem to be a desire among the research community to push forward with larger-scale studies. Unfortunately, as with so many other promising treatments and therapies for chronic pain, it is yet another example of ‘watch this space’!

blbchronicpain.co.uk/news/a...

Ambroxol safety record

"Ambroxol has an excellent safety record, and has been studied in >15,000 patients in more than 100 trials. Ambroxol is sold over the counter in much of the world as an expectorant at doses of 75-120 mg/day. Furthermore, Ambroxol is considered so safe that it is approved for intravenous use in pregnant women at a dose of 1000 mg/day IV (15 mg/kg) to improve fetal lung maturation before preterm delivery. Clinical trials in more than 390 pregnant women have been performed using doses up to 3000 mg in one day and 1300 mg/day for up to 33 days. Critically ill neonates have also been given doses as high as 30 mg/kg for respiratory distress. The fact that Ambroxol has been used at very high doses in pregnant women and neonates suggests that these doses are safe."

centerwatch.com/clinical-tr...

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

I have read what you have posted already as on the Parkinsons forum and you have now quoted the same trial info in this post for the third time. I appreciate that you think it works for you but it is a small trial only, no multi site, study design etc

Safety is great but what about when you are taking fibro med X or Y. Also the reductions do not seem as significant as you allude to with variance between about 10 and 30% reductions which would be less than acceptable in a pharma trial.

But would need to see the study data including its design. Again, glad you are benefiting from it but please do not make it the only issue you are participating on this forum for.

in reply to desquinn

What I believe I posted here was a summary of three recent small trials on ambroxol for fibromyalgia and nerve pain, a summary which I had not posted here before, as you noted the one trial I posted on it previously, but there were two more. As for the trial results not being as significant, I truly don't see how you get more significant than when one study finding says " this compound is the only treatment option used thus far that has the potential to address not just individual but all of the aforementioned aspects of pain", but we may disagree on that point given the limited data. Glad you see the overall safety data as great, as it certainly appears to be and has been for me. I can only hope that any trying it here and finding it helpful will add their voices to those already in the research community pushing for it, without large drug company support that may be the only way to get the larger trial studies on it we both agree should be done. Yes, I will be posting on other topics of nerve pain management as I find them and try them. Thanks for the review!

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

The 25 people study has been cited twice by link and as a quote but still the one trial relating to fibro.

"I truly don't see how you get more significant than when one study finding says " this compound is the only treatment option used thus far that has the potential to address not just individual but all of the aforementioned aspects of pain","

Its not just the limited data but also the study design and knowing how it was conducted. I suspect no controls and it being an observational study. If this is correct it is less than ideal but expected in an initial pilot.

But still the stats on the improvement within the group are between 10 - 30% improvement. So on a pain scaled of 1 to 10 and starting at an 8 you are looking at going down to a 7 or a 5? While a 30% reduction would perhaps get a pharma drug moving forward just but a 10% would not.

in reply to desquinn

Can we say this? rather than debate the numbers around a few small for me successful trials, and what BigPharma would or wouldn’t do with them, the takeaway for me from them is that it really worked for a number of the patients to help manage their nerve pain, just like it worked for me with my PD. Beyond me, I can tell you that Ambroxol works for my wife who has a form of IBD and at times very severe bladder pain (which is another reason I felt I should tell nerve pain sufferers here), as well as others I have talked to. What I can’t figure out, is why if something is pretty safe, really may help someone with fibro or other nerve pain, we should debate the adequacy of small trials and their numbers when people that are suffering could maybe get some additional help with their pain if they just tried adding it to their regimen after they discuss it with their doctor? To me at least it’s pretty clear it’s worth a try, and my wife and I have done just that for different reasons with very good results which I really just wanted to share. Just my thoughts, but each person with a such a disease needs to make their own call as to what they are willing to try to help them manage severe nerve pain.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

one of the reasons for my response to your post is that it is not the first and will not be the last such suggestion of try substance X. And when it is based on a clinical trial then that trial should be examined for its relevance and quality. I have heard the same said about guaifenesin, cherry juice, a type of sugar, this or that supplement. And we get many posts on our Facebook, twitter or other channels that this substance X by Dr blah cures fibro, piles, cancer and every other ailment.

I know you are not saying this but I still try to look at studies and apply a bit of perspective. Also jumping on someone else's post and say this could work from you when it is not really what the OP was asking for also draws some attention. I know I am a bit jaded when evaluating stuff like this but good ideas and solutions will always overcome any scepticism.

If you look back on my comments on something like LDN which has had if memory serves 2-3 pilot studies with larger numbers and published data then I had similar comments but a more positive view as the data was more significant and the study was better designed and there were more of them albeit still a single site.

I suppose what I am saying is that I cannot say that it does not work from what you have referenced but I would not try it without better evidence.

in reply to desquinn

I'm sorry you won't consider trying ambroxol without more evidence than is currently available, as it really works on nerve pain for me, my wife, and many others like those in the trials. As was said in the summary, that's a "shame because, as far as can be determined currently, unlike so many other drugs used in the treatment of neuropathic pain, ambroxol seems to be both non-addictive and to have very few side-effects." I only hope that others reading this thread will not be discouraged from trying something now that could potentially really help them manage their pain as it has others. Based on how acute and unbearable to the point of losing one's mind the nerve pain can be for my wife at times, I am extremely thankful we have this additional option. I am confident based on my experience with it and others feedback that when large scale studies are eventually conducted, it will be found to be very effective on a host of nerve pain. I do understand your position of let's wait and see, I just do not share it in this case as there's little reason not to try it if you're in terrible pain, just consult with your doctor before trying it as always with something new. Again, just my thoughts.

As I think you and others might be interested, here is a link to the complete publication of Ambroxol for fibromyalgia in the Journal of Pain Research, it includes a number of interesting findings for those doing their due diligence on it:

pdfs.semanticscholar.org/90...

spzgirl51 profile image
spzgirl51

Hello Tiacoyle99 ,I think you should send a letter explaining you are keen to get a better pain management routine and that you thought your previous telephone consultation was over.

I agree with other replies, especially, keeping a detailed pain diary over the next week or so.

I have fibromyalgia alongside rheumatoid arthritis.

For me stress and worry are a definite trigger for more pain . You have my admiration and best wishes . You really need to feel supported listened to by your GP.

I have used YouTube to find information and guidance about fibromyalgia. The university of Michigan in America posts treatment guides for fibromyalgia patients who are unable to attend seminars in person along with short self help treatment guides. Which might be useful along with any meds you are taking

If you google Michigan university and fibroguide, hopefully you might find techniques to manage anxiety , stress even the intensity of your pain.

Trauma is a major trigger for fibromyalgia which stress will absolutely make worse.

I am not linked to the university in any way . I am just a person in the UK, trying to live with fibromyalgia like you.

It prejudiced to assume you are just looking for pain killers and extremely ignorant that there is no way to treat fibromyalgia.

Try to find ways to give yourself a few minutes of calm relaxation and treat yourself. An oasis of calm in the storm. Be kind to yourself.

Good luck

foxkennedy21 profile image
foxkennedy21

Swap surgery and quickly! You don't as an adult and a patient need abuse off anyone. I swapped doctors when my last lot were horrid to me and haven't looked back. Do you have to deal with that particular doctor? Fibromyalgia is tough to manage. You need a way of coping that doesn't involve non-stop painkillers. I wish you luck.

valseag profile image
valseag in reply to foxkennedy21

I agree, I think most fibro patients will have encountered at least one doctor like the one you describe. If someone believes they can't help you, they really can't - or won't. I personally discarded three GPs after realising they wouldn't be able to help me - the fourth one has been much better. Good luck.

Dhughes profile image
Dhughes

Hi sorry to hear about your gp I have one just the same I asked my gp for a sick note for universal credit and she started laughing at me saying I’m a young woman am only 40 why do you need a sick note and when I got sciatica she said your only young why do you keep getting all this and she told me you can’t take tramadol with gabapentin together which she prescribes tramadol for my fibromyalgia and now she prescribes gabapentin for the sciatica so I take them both I think they just tell you anything Im changing my doctors today I’ve had enough a wish you all the best

Sorry to read about your torment, Tiacoyle. It hurts when a doctor fails to understand. It feels like knocking you head against the wall while in pain. I can't tell you how much I've felt like hanging up on doctors. Unfortnately, such burst ups for me lead to flare ups. But I agree with desquinn. Get in touch politely and explain yourself in a letter. Personally, I stick to one doctor, I ask for her everytime except when she is not around. I am polite and appreciative of her that now she recognises me. Sometimes, knowing the problems with our illness, you strategise. I hope you have a better day today.

Kelly1996 profile image
Kelly1996

I’ve had a very similar situation where my previous doctor wasn’t listening to me, laughed at some of my comments and told me there’s nothing she can do for me. I called my doctors to ask them to change my doctor, which they did but then yesterday my appointment was with my old doctor so I was so frustrated too. You have every reason to be annoyed with this. You should feel like a top priority, and their job is to listen to you.

If I was you I’d let your doctors receptionist know that you feel you aren’t being listened to and that you would like a different doctor. I’ve learnt now that everytime I call to make an appointment, I will check that it’s with my new doctor, not my old one who doesn’t listen.

Hope you get the help you need, and remember you’re worthy of being listened to!

geminilady profile image
geminilady

Hi Tiacoyle, i am sorry you are having such a bad time with pain. You should be able to rely on your doctors for help. I have read through the replies and i agree that you should sit down and calmly write a letter to your surgery explaining everything you are going through and how you are feeling and apologise if you came across as rude. The trouble with doctors these days i find, is that most of them have no idea how bad living with Fibro really is, because truth is, they dont have to live with it and have no real idea how to treat it. You say one doctor was trying all sorts of different pills, well in my opinion i would stick with him/her. Thats how i found the right combination of pills which helped me. My doctor kept trying me on different combinations for about a month, if they didnt work, he prescribed something different until after 8 months, we found the right combination which for me was Gabapentin and Tramadol together. I also use a cheap over the counter gel - Freezegel. I think its wonderful stuff and when the pain is really bad, i smear this stuff all over the area and within a few seconds i can feel the cold seeping into the painful bones and muscles and it really helps to mask the pain. Its not for everyone, but i swear by it. I also tried acupuncture for a month and that also helped. In the initial stages of being diagnosed with Fibro, its all about learning what works and what doesnt. Its trial and error and it takes a while to get it right. Persevere with different pills, what works for one, doesnt work for another. And be kind to yourself, pace yourself and accept that its going to take a while to get some sort of normality back in your life. Good luck with the doctor.

RichieC29 profile image
RichieC29

Dear Tia, as previously commented by others definitely write to the Practice Manager that prior to hanging up the phone you had been polite and said good bye assuming the consultation had ended and are very disturbed and upset that the Doctor thought you were being rude, and that further to the phone conversation you would like to request an URGENT referral to the Pain Management Clinic/ Nurse to discuss further possible treatments including medication and also a referral to a Physiotherapist who specialises in pain management. Hope you get sorted soon. Regards Richie

HappyHealthyGirl profile image
HappyHealthyGirl in reply to RichieC29

That is fantastic advice Richie - just what I wanted to say!

Tiacoyle99 profile image
Tiacoyle99

Thank you everyone for your replys I really appreciate the support and I’m so thankful that you all know the troubles of living with fibromyalgia, the doctor basically made it out that I was only phoning for pain killers I actually phoned to see if there is any help with sleep I’ve barely slept over the past two weeks I phoned him last week about it and he referred me for counselling 🙄 he just doesn’t like me never has. It’s everytime I phone the doctors I get him now it’s the same story everytime I’ve told you Tia there is nothing you can do for fibromyalgia I wouldn’t wish it upon my worst enemy try some exercise pain killers won’t work. It’s frustrating because the other doctor did prescribe me didn’t things to try and I mentioned that to him and said why are you saying nothing will work and the other doctor is saying nothing will cure it but we can manage pain, he then went on making out I was saying something bad about the other doctor she’s not here to defend herself, I said to him I’m not saying anything bad I’m wanting to know why use are contradicting one another use should have the same knowledge. He’s going to organise a 3 way call with me him and her but ofcourse they will stick together, they just see me as young and I don’t know what I’m talking about I’m really upset that this is the way I’ve been treated and making me out as if I just want meds I phone nearly everywhere because I’m scared I don’t understand I phoned myself an ambulance on Friday thinking it was a heart attack with pain turns out it’s anxiety

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Tiacoyle99

This is why writing it down is a good approach as it allows you to consider what you are putting across to them and allow someone else to review it. Structure it and make sure you get all your points across.

MaggieSylvie profile image
MaggieSylvie in reply to Tiacoyle99

The big question that seems to be missed is: What causes your sleep problems? Is it the pain or is it something else? If it's the pain, then that needs to be addressed so that you can get some sleep. Many of us are given amitriptyline. If it's something else that is keeping you awake, then that needs to be examined. Otherwise, you could treat yourself with an over the counter med. The local pharmacist might be helpful where doctors can't be bothered.

Crystalbishop65 profile image
Crystalbishop65

Morning First there are other stuff you could request for like I did. Stop Suger - and get checked for sleep apena

Do you get up often to use the loo.? If you have sweetners stop because it increases more pain on your joints and stop honey.

So you need to basically

Try different foods. Stop anything with high sugar. And get full blood works done to check for thyroid and diabetes..

I was a nurse. And I have fibromyalgia.. so do your own research you won't regret it

Bless you

Crystal.

Midori profile image
Midori

Find another practice Fast!

That is appalling Treatment from a Surgery which is supposed to have a Duty Of Care to you. A referral to a Pain clinic should not be beyond their capabilites at the very least.

OK, you said you were mad at him, do you get to see the same doctor each time, or is it a different one each time? It can make a difference as many doctors still think Fibro is a non-event. Were you rude first? remember that even GPs can have an off day, or a family problem you may know nothing about.

I would suggest a complaint letter, first to the Practice Manager, setting out exactly why you had to put the phone down, (rudeness, or similar,) Say the Put down of the phone was to not hold up the queue of other patients, and that the response of the threat to deregister you during the Pandemic is unethical to say the least, ( in my opinion as a former nurse). Emphasise their Duty of Care to you.

Also. copy your letter to PALS, and the Care Quality Commission.

Cheers, Midori

CrystalGecko76 profile image
CrystalGecko76

So sorry you have gone through this...mine started at about 21 so I feel you (I'm now 44) doctors are extremely frustrating...they just do not know what to do and either fob it off as all in your head or that you are looking for drugs...they pushed me into the exercise program but depending how severe your fibro is may not work for you, for me it made me very poorly...shivering and shaking and throwing up hours after I'd come home from the program...we agreed I should stop going I now just have to put up with my pain, exhaustion and nausea...I have tried CBD products and whilst it doesn't help me personally for the fibro it does help a spin off condition with my feet...can you try another practice? Sadly round here my current practice owns most in the area so getting a second opinion or moving practises not so easy when run by same doctors

Elizahl profile image
Elizahl

Oh I hear you I had a new doctor come on board prescribed a few weeks of pain killers then said now this is your last batch if you come looking for more you wont get them. I was nearly crying she made out like I was an addict for a few weeks of help. I had to struggle on without them. I did some research myself about what could help and I paid for a private consultation with rheumatologist to get an official diagnosis and and options for a plan of action and felt better for having done that. She was more sympathetic then when I went back but I fear she just doesn't have the answers so doesn't know what to do with me it's most likely the same here. I tried amitriptyline but it didnt suit me as prescribed by rheumatologist I have an appointment with gp on the 29th it was the only available date to discuss what I can try next but I am not hopeful of finding a solution with medication. I am doing physio and yoga and although they are difficult I am managing but just about doing them. I am in pain but it has helped to ease it a little and my freedom of movement has improved a lot. I am hoping to try cbt therapy as I read it is good for it also and anything is worth a try. You may have to ring and apologise to gp even if it kills you as unfortunately they are our lifeline when in pain and we need them. Just explain you thought they were finished speaking and they had given up on you and you were upset ask to wipe the slate clean and start a fresh. Tell them how frustrated you are with your situation and see what you can come up with together for a more long term solution. Best of luck with it I hope you find something that helps x

CrystalGecko76 profile image
CrystalGecko76

Totally agree though that doctors seem to come first not the patients...I used to watch doctors on BBC and found it unrealistic cause the doctors actually cared their patirnt was depressed and suicidal or hadn't seen them in awhile...never had that with my doctors for a long time, not since our lovely Indian doctor gave up that practise...I must admit I prefer the Indian doctors they seem to listen more and locums were the ones who helped me the most too...it was a locum who diagnosed my under active thyroid and sent me for tests and another who got me sorted with the fibro - it seems the regular all the time doctors get settled into routine and don't seem to want to know after awhile...the nurses are brilliant though...never had one issue with the nurses in our practise...I'm sort of hoping this long covid stuff will filter over to fibro and they can use the methods and treatment on us too

MaggieSylvie profile image
MaggieSylvie in reply to CrystalGecko76

If given the choice, I would always choose an Indian doctor as I think their history has always been a holistic approach to wellness.

Farmerboy profile image
Farmerboy in reply to CrystalGecko76

Watching doctors behind the scenes is not real life, made out to be but we all know in reality what is shown is made to look good by those taking part and agreed to be filmed.

Sian10 profile image
Sian10

I got frustrated with a male doctor cause I wanted to speak to a percific female dr he offered me other female docs but I said I wanted her said bye and put phone done hour later she phoned me , I get your frustration as my docs don’t know what to do with me either cause they don’t get fibro put a complaint in to the practice manager ? Good luck take care x

paula9087 profile image
paula9087

I used to come out of seeing a doctor upset and feeling they think it’s all in my head. It was so frustrating and upsetting, my mum said she will come over with me but being a adult in my 30’s I thought it would like I’m like a little child. In fact the doctor I see for my fibro now is actually the doctor I seen a few years earlier said I would have to live with the pain I’m in. It was only going around different doctors that I ended back with her after another doctor mentioned it to her and so referred me to her saying he thinks it could be fibro. Though Im on pregabalin, amitriptyline and painkillers she says there isn’t nothing more she can do because of the side affects of the medication, though friends of mine are on a lot higher doses. I have noticed any stress can make the fibro more intense so I try and not to let things get to me. Also gentle exercise and exercise in the pool is even better for fibro is good, not a hard exercise. I go to exercise classes where you have to be referred by your doctor, it’s meant for people who have some sort of disability, over weight and any age, you have to pay but it’s really good. Write a letter or a relative phone the surgery for you to explain that you are frustrated with the pain and don’t feel you are being listened to and with two doctors giving different approaches to your condition doesn’t help with the anxiety you are having. Put yourself first and be kind to yourself x

That seems to be how most doctors react to fibro. I’ve had it for 4 years now and I’m 24. They seem to think we are druggies and are making everything up. I’ve not found one person that understands one bit yet. I’ve gone through all the meds and down all the possible routes. Fibromyalgia is horrendous, the pain is so real, everything else it comes with is so real! If there was proof of it we wouldn’t be treated so badly. I really do hope you find another doctor that will listen to you x

fightingfatigue profile image
fightingfatigue

Hi Tia, ask your doctors to refer you to a rheumatologist. They should be able to help you. Your doctor is a DH and they should treat you sympathetically. If you have no joy with them referring you, change your doctor. Good luck, there is help out there xx

Tiacoyle99 profile image
Tiacoyle99

I just feel really hurt to be honest that I’ve had this response off of one of my doctors at my practise I get on really well with the doctors there but he’s new he’s been ok with me but this time it’s been so different because I’m brought up about the two doctors contradicting themselves, because I’m young they think they can get away with it I’m going to call doctors in the morning and hopefully speak to the head of the practise

Kezz15 profile image
Kezz15

It’s a terrible experience for you and no doubt has made you feel worse physically as well as the sheer mental frustration. GP practices have managers who you can speak to about your experience and who will listen to your explanation of what really happened. You can also explain how the Drs attitude towards you and your chronic condition made you feel (physically and mentally) both at the time and now having had time to process what occurred.

Getting a written warning from the GP practice too is quite an overreaction I feel even if they believed you put the phone down, this too could be discussed with a view towards getting that “warning” removed from your name.

Ask a sensible friend or family member to help you with this, support you during the meeting regardless if face to face or via phone/teams whatever.....you are not well and it has been a very negative experience fir you, trying to get help from someone who is supposed to show empathy and compassion towards his patients. It’s true that some drs simply don’t “get” fibromyalgia though, he is clearly one to avoid like the plague.

I really hope you get this resolved and try also to speak only to the drs who have previously shown compassion towards your situation. I too have had problems regarding GP drs and fibromyalgia to the extent I was accused of being a drug addict .... simply due to asking for pain relief... which I hadn’t had and didn’t get... ultimately I had to change GP surgery’s (which you can also do...) and now I have several wonderful Drs who actually care about their patients and who seem to genuinely understand the meaning of the oath they took when they chose their profession.

I am a paramedic and there are times I have been horrified and disgusted at the treatment I have received. Or not...as the case was previously. Thank god for our rights to change GP practice, to make a complaint (practice manager...do it!!!) and our right to access decent medical care. Good luck!!

Lemonyblue profile image
Lemonyblue

Please do not stop taking your Gabapentin!!Every doctor would know you have to wean yourself off these very gradually under the care of a medic.

I know this from personal experience.

I really think you should try to talk to a different doctor.

I agree, not much can be done to help fibro but some people do get some relief from medication so he should not have said that to you.

We have to fight for help.

JayCeon profile image
JayCeon

After the initial frustration of this has let off, you might want to change or you might reconsider staying and reacting in the way Des has suggested. I've seen 45 docs/specialists in the last 15 months, I've stayed with some a few weeks longer than I sh'd've, because I wasn't quite sure whilst their treatments caused a lot of harm, but stayed with others despite some disappointments, because they had their good sides / advantages.

Unless changing to a better doc is easy, I do like situations where 2 docs have different ways of treating, because then I have more options to decide myself and use them in certain tactics. I tried a bit of pain killer stuff, none worked tho, which I'm pleased about. So - apart from acupressure - adapting, pacing, pinpointing is the only thing helping, which is what your other doc is saying: "Nothing" will help (meaning: apart from learning how to adapt).

So what I'd try first before giving up on them is to take Des's route and in doing so try to make sure both docs know what you need from them, i.e. that you need them to listen and understand, emotional support and thinking things thru with you. If that doesn't work in the next 2 consultations, or you feel you can't get out of a defensive/submissive position, and you can, then change by all means.

giraffe8 profile image
giraffe8

Complain to the practice manager and PALS , you are the one in pain and they should have some empathy for you. I have suffered from fibromyalgia , anxiety and pain for years now I am so sorry you are suffering too.

Lizkel31 profile image
Lizkel31

I feel exactly the same my gp told me 30 years ago I wasn't in that much pain I was to young and it was all in my head it took 25 years for him to listen to me . I was getting treatment for osteoporosis and was told 6 weeks ago I didn't have it when I asked the gp why I was on treatment for it I had to go for a dexa scan which showed I had osteopenia which is as far as I know osteoporosis. January 2021 i lost my mum before covid started to come to light ,I had a phone call from the same gp that my mum attended asking me to go in they had to speak to me so got on my mobility scooter to the gp to be told the sample of flem they sent off came back abnormal and I had TB well my depression was already bad all I could think of was my mums funeral and what the gp said on my way home I came off my scooter and fractured my fibula so had to Bury my mum with a splint on and me on crutches, 2 days after the funeral I rang to see if the results were back from the sample I done while I was there and was toldby this dreaded gp I wasn't told I had to I burst out crying and my son who has a qualifications in nursing and 15 years experience in caring for mentally and physical disabled adults took the phone o.m.g he gave that gp a right mouthful ive been to see him since and he's not said a word , I've lost all my trust in my gp I'm moving gps as soon as all this is over because I feel like I've been there guinea pig for long enough, sorry for my big rant haha

Roo1972 profile image
Roo1972

Hello new on here but not new to GPs who roll their eyes and tell me I just need to get on board with meds. First port of call is the Practice Manager (assuming they have one), explaining that you feel unheard, not listened to. This often helps as you then have a 'mediator' in the mix rather than you and the GP when often the GP is seeing you as a problem patient rather than a patient with a problem. I'm in the same position myself in that I want referral to a neurologist but just keep getting different pills to try but not willing to keep trying and fumbling round in the dark. If you prefer you can ask a family member or friend to mediate and come with you to any appointments/be on the call again in a sort of advocacy role. As fibromyalgia is considered a disability you should be eligible to take someone in with you 😀

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