Hello everyone,
** FIRSTLY - this ended up being a long thread - apologies!
I was assessed by Rheumatologist about a month ago and diagnosed with fibromyalgia and CFS . Having dreaded the appointment fearing being gaslit again, I felt lucky to have a kind Dr who was very thorough and made no judgements re mh etc which was a relief. But yesterday I had my first GP appointment since diagnosis and it was awful and left me feeling very upset. My GP hasn't been the best - but far from the worse-so I have stayed with her as 'better the devil you know'. I did have the best GP ever when my health first deteriorated in 2018 but landed with this new one in 2022 who has never got it -if you know what I mean.
For background (I have opened up about this in previous posts) , in summary my body was running on adrenaline for many years caring for sick daughter with chronic illness, long spells in hospital , no respite and numerous battles with health and education for her to get the care & help she needed. 2018 work became untenable along side caring for daughter: my manager stopped allowing the flexi to attend her health meetings!! & I lost the fight to battle any more & resigned. But leaving work led to a MH breakdown (I used to hide my MH problems but not anymore ) & I lost lots of weight (developed eating disorder). Over the next few years, under weight & very stressed - the fatigue & pain started and progressed, but as I was underweight it was -understandably-blamed on that. But not helped as waiting times for ED treatment so long -years - so I know this ingrained the fatigue & pains in my body . BUT finally 2023-2024 I had 2nd lot of ED treatment with success in regaining weight . BUT throughout the fatigue & pains worsened. My therapist thought this was probably beyond weight gain recovery-but my GP kept saying 'well it's going to take time for your body to heal. Then I was aware I was in the menopause and that overlapping with have an ED was a perfect storm for my body. I kept going back to GP & suggested to her (she never suggested menopause could be causing my symptoms) trying HRT . I did this last year but no improvement.
I continued to return to her regularly (as I have chronic low sodium I do have regular blood tests and reviews) and managed to get some pelvic tests (fibroids but told they would not be causing me pain-not sure I agree) but I continued to deteriorate especially after I had major surgery in October. Then at Christmas something came to my attention about fibromyalgia and I cried-with relief; until this point I didn't think i quite fitted the CFS criteria (don't get frequent sore throats etc) nor fibro as wasn't sure I had pain in enough areas of my body) but reading about the common link with IBS which i have badly, plus unrefreshed sleep, I felt maybe I do have fibro.
So in Jan I spoke with my GP, explained what I had read and discussed could it be I have it. She said that it would have to be diagnosed by a rheumatologist which she could do 'if i wanted'!! (this seemed strange to me - 'if I want her to'?? - why wasn't she saying I think this could be a possibility and she will refer me. It made me feel guilty for saying yes, refer me. I knew it would be a long wait so I said please do. But over the next few weeks (to current day) I just had increase fatigue & pains and not able to do much at all and missing most social stuff etc. When I heard the wait was 61 weeks (!!) to see the rheum. , i enquired about private but then v v v lucky I know, I phoned nhs again to check the wait was def 61 wks, which it was - but they had a cancellation for the following week! I felt I'd won the lottery!
So I have digressed a lot: the rheumatologist , very kind man, gave me a leaflet on fibromyalgia and then explained I go back to GP for advice/meds etc.
That appointment was yesterday 9am and I am worst in the mornings. I thought good-as she can see me at my worst. My husband drove as not feeling well and also came in with me. From the onset she was even more evasive that usual. I was feeling genuinely so awful , light headed (standing in the queue to check in was enough to make my heart rate soar) & I couldn't think or talk straight. Yet she didn't think to check on my obs. There was no empathy to the new diagnosis; she did go through medication options (most I had tried and not got on with prior) but I do find tramadol helpful & she will prescribe. I wanted to check in on her again about whether as still get a lot of pain low in abdomen and I have multiple fibroids and have had large ovarian cysts removed-if I could have another scan, but she replied ''well you have pain all over don't you' - which she never said prior to my diagnosis, but alarm bells rang, especially since I calmed down and reflected that this is what I have read- the 'well you have fibro' LABEL so all pain and symptoms will be fibro.
I couldn't tell if she was irritated that I had been diagnosed (I always wonder if she thinks I am making it up; when I was under weight BMI wise she took me serioulsy but as soon as reached 'normal' BMI she stopped wanting to see me, take bloods etc despite all the symptoms I had. I had bloods taken for the rheum appointment and my HB (re anemia) has been creeping down (117 currently for those who know (I used to be a nurse!!) & with the massive increase in fatigue I thought maybe she would discuss this , my diet etc and maybe request more bloods to monitor. This in fairness is what she would do previously - but she not interested at all and actually said (which has really upset me) 'this is normal for you'. (scream!!). So its normal now for me to be anemic as have fibro diagnosis and don't need monitoring. I h ave told her last few appointments that my appetite has been very poor (not ED related - just no appetite a lot of time) but no discussion there. And she normally worries (i thought over worries) about my sodium which is below normal most of the time - but for the first time she not interested in that either!!
I had enough at this point (in addition I have extra stress as last weekend found 2 breast lumps & awaiting fast track investigation) and even that she unempathetic about despite knowing my m um died of breast cancer! ). So I left before I became too upset.
But on reflection, and I guess as an ex nurse: I have been-like many on here, diagnosed with a debilitating condition (and like many on here have debilitating symptoms but fighting for a diagnosis) yet zero exploration of how I am coping, etc. No follow up, nothing. So it's true isn't it - zero concern for patients with fibro and now we bottom of the pile.
I have decided to change GPs. I always thought probably better to stay -'better the devil you know' - but this pushed me of the edge. I feel no faith that she and maybe any GP care about me/us. Because I am a person who will do own research and join forums etc, is how I have gained a lot of knowledge and how came to find a possible diagnosis for myself. But I feel more like a hypochondriac in the eyes of the GP then with my MH problems!
I just needed to get off my chest! Sorry so long . Don't expect many will get to the end!
But the thought of finding out I have breast cancer (or any other future health problems) under this GP fills me with dread. SHe deems me a hypochondriac for sure. Sad isn't it - on top of not being able to work and the benefit system being radically cut.
Big hugs to all x
** FIRSTLY - this ended up being a long thread - apologies!
I was assessed by Rheumatologist about a month ago and diagnosed with fibromyalgia and CFS . Having dreaded the appointment fearing being gaslit again, I felt lucky to have a kind Dr who was very thorough and made no judgements re mh etc which was a relief. But yesterday I had my first GP appointment since diagnosis and it was awful and left me feeling very upset. My GP hasn't been the best - but far from the worse-so I have stayed with her as 'better the devil you know'. I did have the best GP ever when my health first deteriorated in 2018 but landed with this new one in 2022 who has never got it -if you know what I mean.
For background (I have opened up about this in previous posts) , in summary my body was running on adrenaline for many years caring for sick daughter with chronic illness, long spells in hospital , no respite and numerous battles with health and education for her to get the care & help she needed. 2018 work became untenable along side caring for daughter: my manager stopped allowing the flexi to attend her health meetings!! & I lost the fight to battle any more & resigned. But leaving work led to a MH breakdown (I used to hide my MH problems but not anymore ) & I lost lots of weight (developed eating disorder). Over the next few years, under weight & very stressed - the fatigue & pain started and progressed, but as I was underweight it was -understandably-blamed on that. But not helped as waiting times for ED treatment so long -years - so I know this ingrained the fatigue & pains in my body . BUT finally 2023-2024 I had 2nd lot of ED treatment with success in regaining weight . BUT throughout the fatigue & pains worsened. My therapist thought this was probably beyond weight gain recovery-but my GP kept saying 'well it's going to take time for your body to heal. Then I was aware I was in the menopause and that overlapping with have an ED was a perfect storm for my body. I kept going back to GP & suggested to her (she never suggested menopause could be causing my symptoms) trying HRT . I did this last year but no improvement.
I continued to return to her regularly (as I have chronic low sodium I do have regular blood tests and reviews) and managed to get some pelvic tests (fibroids but told they would not be causing me pain-not sure I agree) but I continued to deteriorate especially after I had major surgery in October. Then at Christmas something came to my attention about fibromyalgia and I cried-with relief; until this point I didn't think i quite fitted the CFS criteria (don't get frequent sore throats etc) nor fibro as wasn't sure I had pain in enough areas of my body) but reading about the common link with IBS which i have badly, plus unrefreshed sleep, I felt maybe I do have fibro.
So in Jan I spoke with my GP, explained what I had read and discussed could it be I have it. She said that it would have to be diagnosed by a rheumatologist which she could do 'if i wanted'!! (this seemed strange to me - 'if I want her to'?? - why wasn't she saying I think this could be a possibility and she will refer me. It made me feel guilty for saying yes, refer me. I knew it would be a long wait so I said please do. But over the next few weeks (to current day) I just had increase fatigue & pains and not able to do much at all and missing most social stuff etc. When I heard the wait was 61 weeks (!!) to see the rheum. , i enquired about private but then v v v lucky I know, I phoned nhs again to check the wait was def 61 wks, which it was - but they had a cancellation for the following week! I felt I'd won the lottery!
So I have digressed a lot: the rheumatologist , very kind man, gave me a leaflet on fibromyalgia and then explained I go back to GP for advice/meds etc.
That appointment was yesterday 9am and I am worst in the mornings. I thought good-as she can see me at my worst. My husband drove as not feeling well and also came in with me. From the onset she was even more evasive that usual. I was feeling genuinely so awful , light headed (standing in the queue to check in was enough to make my heart rate soar) & I couldn't think or talk straight. Yet she didn't think to check on my obs. There was no empathy to the new diagnosis; she did go through medication options (most I had tried and not got on with prior) but I do find tramadol helpful & she will prescribe. I wanted to check in on her again about whether as still get a lot of pain low in abdomen and I have multiple fibroids and have had large ovarian cysts removed-if I could have another scan, but she replied ''well you have pain all over don't you' - which she never said prior to my diagnosis, but alarm bells rang, especially since I calmed down and reflected that this is what I have read- the 'well you have fibro' LABEL so all pain and symptoms will be fibro.
I couldn't tell if she was irritated that I had been diagnosed (I always wonder if she thinks I am making it up; when I was under weight BMI wise she took me serioulsy but as soon as reached 'normal' BMI she stopped wanting to see me, take bloods etc despite all the symptoms I had. I had bloods taken for the rheum appointment and my HB (re anemia) has been creeping down (117 currently for those who know (I used to be a nurse!!) & with the massive increase in fatigue I thought maybe she would discuss this , my diet etc and maybe request more bloods to monitor. This in fairness is what she would do previously - but she not interested at all and actually said (which has really upset me) 'this is normal for you'. (scream!!). So its normal now for me to be anemic as have fibro diagnosis and don't need monitoring. I h ave told her last few appointments that my appetite has been very poor (not ED related - just no appetite a lot of time) but no discussion there. And she normally worries (i thought over worries) about my sodium which is below normal most of the time - but for the first time she not interested in that either!!
I had enough at this point (in addition I have extra stress as last weekend found 2 breast lumps & awaiting fast track investigation) and even that she unempathetic about despite knowing my m um died of breast cancer! ). So I left before I became too upset.
But on reflection, and I guess as an ex nurse: I have been-like many on here, diagnosed with a debilitating condition (and like many on here have debilitating symptoms but fighting for a diagnosis) yet zero exploration of how I am coping, etc. No follow up, nothing. So it's true isn't it - zero concern for patients with fibro and now we bottom of the pile.
I have decided to change GPs. I always thought probably better to stay -'better the devil you know' - but this pushed me of the edge. I feel no faith that she and maybe any GP care about me/us. Because I am a person who will do own research and join forums etc, is how I have gained a lot of knowledge and how came to find a possible diagnosis for myself. But I feel more like a hypochondriac in the eyes of the GP then with my MH problems!
I just needed to get off my chest! Sorry so long . Don't expect many will get to the end!
But the thought of finding out I have breast cancer (or any other future health problems) under this GP fills me with dread. SHe deems me a hypochondriac for sure. Sad isn't it - on top of not being able to work and the benefit system being radically cut.
Big hugs to all x
