Has anyone else with RLS had issues with getting a GP to listen about potential Fibro symptoms too?

[p4091816]

Hi, I am also new to this forum. I will give the lavender suggestion a go. I also suffer with RLS. I have also been having symptoms of Fibro I think, bad pain in various areas of my body, especially my legs at times feels like they are burning or I've walked through stinging nettles at times this sensation is in other places too, like under my upper arms, wrists, lower back, top of bottom, hips and sides of my belly, not all at once and intermittently, also feels like sharp stabbing pains. I feel drained and lethargic everyday my concentration at Uni is so bad, if I make it in, worserned sleep issues than they already are and low mood. Just wondering if anyone can give me some advice on getting a GP to listen, as I've been struggling the past couple of months as this has progressively got worse. I've seen several at my practice, I'm told to come back if it persists or they increase my anti depressants or meds for RLS and even one said it was all in my head, I came out mortified. I have even been to the Urgent care centre and even a nurse understood and gave me some stronger pain relief, as she noticed a recent blood test didn't look normal, where not one Doctor I have seen have brought it up. I'm so frustrated feeling this way and how I'm being treated by the Doctors. Just wondering has anyone else had issues bringing up Fibro symptoms to their GP to see if that is what they are suffering with. Or does anyone have any advice for me and it would be greatly appreciated?

[M_argi]

Hi, I'm New here too . I have fibro, RLS, amongst other things , and I feel your frustration , the only thing I can think of is to find a new gp , and to ask if they are fibro friendly , if you have no choice but stay with your current gp perhaps say you would like to be reffered to rheumatologist, as you need to discuss your issues in more detail. Do you have access to pain management , could you be referred in any way to another professional , even a physiotherapist or the like ? In order to be listened to. i had this very same issue a few years back my doctor was wonderful, but he passed away and my new Dr didn't get it , the fibro , the rls, so I poured my thoughts out one day in her office , i told her everything and a bit more for good measure , she found me help in other proffesionals and now we have a good relationship , i hope this helps but don't give up , you need to feel understood as well as treated .

[p4091816 in reply to M_argi]

Hi M_argi, thanks for your reply. Sorry you went through the same. Thanks for the advice, think that's what I am going to have to do try a longer appointment explaining it all more in depth and if I get no where try changing my GP practice, as I have tried most of them in there I don't have a set one. Even my Neurologist dismissed the potential Fibro and concentrated just on the RLS. It is really frustrating, not knowing what's going on fully, so many Doctors seem to think it's all the head.

[M_argi in reply to p4091816]

I have had this put to me in the past also,all in the head, my answer was this , if a person has a broken leg you can see it ,if a person has depression ,its in their head but in their behaviour you can see it , if a person has fibromyalgia ,sure enough you can't see it but as a doctor don't you have the obligation to treat each patient fairly . Write all your symptoms dow and give the Dr that , and say you need to be listened to , stress wont help your rls .

[p4091816 in reply to M_argi]

Thanks. Very true. I have already tried that too. I have seen a few posts on here about people using CBD oil too so going to give that ago, as I don't feel benefits of medication, I have been given. I've resorted to emailing the Practice Manager today, hopefully my concerns will be past on before going for another appointment at the end of the week. If not I will look into changing GP. Thanks again for your advice, feel free to reach out again should you want to chat about with someone who understands :).

[M_argi in reply to p4091816]

Ahh thank you , it surely does help having a chat😉,and I hope you get listen end to properly 😊

[p4091816 in reply to M_argi]

Thanks

[Sandee007 in reply to M_argi]

Is it normal that my legs are wobbly during the day?I really need an answer to this question because my balance is sometimes really bad. It feel as if my arms-neck-leg muscles are very tight and contracting a lot...have to stretch many times.

My doctor told me that I have RLS but I am not sure if this is the only thing I have because

my balance is bad-have clawtoes and support arches.

I don't know what to do anymore...went to so many doctors and I have restlessness in all body now...

Sitting in a train-bus or hairdresser makes me nuts.

Also... my body is stiff and sometimes difficult to move because of those muscle contractions...

Please any help would be great!

[Hidden]

It's interesting. I have one of the world's best physicians (in my humble opinion) and she always listens to what I tell her. She diagnosed me as having Fibro, then changed her mind at the next visit, then changed it back the last visit. I think she is basing her assessment on whether or not I am flaring at that moment.. ha ha. Plus she doesn't want to list it on my diagnoses and I'm not sure why. Maybe she is afraid other physicians will discount my other symptoms if they see Fibro?? Not sure. Anyway, best of luck getting your point across to your doc..

[p4091816]

That is bizzare, you want to know where you stand and it on your records. I hope you get it sorted. I think there's such a stigma around Fibro with Doctors it may seem. Thanks and I appreciate the response, I was keen to find out other people's experiences on this.

[M_argi]

It's true doctors don't like to diagnose certain illnesses , i even had a physiotherapist GP ask me did I want my diagnosis mentioning to a different specialist as it would cause complications ? And , that it would affect my insurance ! I said , it's too late to worry about al that ,it is what it is ,and its part of me , saying that you're more or less saying I am not relevant so no leave it in thank you !

[p4091816]

Just an update. I kept going back to my GP and eventually got a Rheumatologist refferal it took some doing, surprisingly I got in quite quickly and was diagnosed with Fibromylagia too last week.

[M_argi in reply to p4091816]

Hi sorry it's taken me a while to get back to you , having a tough time here . I'm so glad for you that finally you have been listened to! Not glad you have the fibro, but that you have answers ,yes 😊

Perhaps now you can rest your head at least and not feel like you're going mad . Has the rheumatologist prescribed anything for your fibro ?

[Parminter]

RLS/ Fibromyalgia are rather common co-morbidities, your doctors are not doing their due diligence.