Please advise as I don't know where to turn

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Please advise as I don't know where to turn

Postby ickleangeleyes » Sat Dec 11, 2010 8:18 pm

Hi all, I'm not to sure when it comes to forums so apologies if I've posted in the wrong place.

I finally got to see a rheumatologist on 15/11/10, I took my husband with me for support. Despite the fact I was having a particularly good day she said I have Fibromyalgia, but she would do some x-rays & a blood test to make sure there was nothing else going on. Then she discharged me into my doctors care. Both my husband & I thought the appointment had gone well. Until I received a copy of the letter sent to my GP which says it's probably Fibromyalgia & gives the impression I'm making it all up. I dread talking to my GP about it as when I told her my diagnosis she started asking me how to treat Fibromyalgia. My symptoms have been getting worse over the last few months, to the point of my husband having to help me wash on Wednesday as I'd lost control of my right hand due to muscle spasms (probably not helped by the stress of even trying to get referred to see Rheumatology).

Thanks for taking the time to read my post & for any help you can offer.
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Re: Please advise as I don't know where to turn

Postby FluppyPuffy » Sat Dec 11, 2010 11:24 pm

:wave: and :welcome: sorry to here you've been told you have FM, you've found a great place here for advice, info, support and a little bit of madness to help you get thru the day :crazy:

Being diagnosed by a rheumy then being discharged back into the care of your GP is pretty much typical of what happens with this condition. What is it in the letter from the rheumy that makes you think she is under the impression you are making things up?? Not sure about your GP asking you how to treat FM, unless she's not had a patient with it before and was trying to find out if the rheumy had said anything to you about possible ways to treat and manage it :dunno: :dunno:

I know it's another of those easier said than done things, but try not to worry about having to see your GP as it could add to how you're already feeling. It might be worth printing up some info from here, to take with you when you next see your GP, it could help her with starting you off with meds, treatment etc.

Anything you want to know, just ask on here and we'll do our best to help you, and let us know how you go on with things :hugs: :hugs: :hugs:
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Re: Please advise as I don't know where to turn

Postby ickleangeleyes » Sun Dec 12, 2010 12:17 am

:wave: and thanks for your reply, I'm glad I found this forum :D I think we all need a little :crazy: to get us through the day.

To start with the letter mentions irrelevant information i.e. that I took my husband with me (was that really so unusual?) I thought as I get confused & forget things it would be a good idea. She also says that my husband & I looked into the diagnosis of FM & think that it probably does fit some of my symptoms which she thinks is reasonable. It just sounded a little like I only have the symptoms because I read about FM. I did explain that I only started looking into conditions that fit my symptoms, so I knew who I should ask my GP to refer me to.
Then she goes on to say that she want me to see the GP about my speech problems ( confusing/forgetting words), loss of concentration & confusion e.g. going to the fridge when the microwave beeps like they are completely separate from FM. She also says my symptoms have improved, when that is not the case at all. It was due to the worsening symptoms, that I pushed my GP for an actual diagnosis. I ended up take an A4 sheet of paper with all of my problems/symptoms and I urged her to consider they all could be one bigger problem rather than lots of little problems. When I had the appointment it felt like I didn't really get a chance to explain all of my symptoms fully, but as the Rheumy was reading the computer screen I thought she could see for herself. She also says in the letter I didn't react to the trigger points except over my cervical spine. When she examined me I was sat on the bed, so she didn't even check all of the trigger points. One of my main points being in my left buttock, the only way I can describe it is it's like a knot of pain that extends down into my left leg.

I don't mind be referred back to my GP for treatment, it's just a little unsettling when they ask you what to do. I've got an appointment booked with my GP next week and I'll take some printed information with me regarding treatments etc. Hopefully that will help, I have also borrowed a book from my local library to try to understand FM a little more and to find out what sorts of things I can do to help myself.

Thanks again for listening :hugs: :hugs: :hugs:
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Re: Please advise as I don't know where to turn

Postby FluppyPuffy » Sun Dec 12, 2010 12:54 am

I think what you did with taking hubby with you was sensible as it can be so easy to miss things in an appt, esp when you're worried about what could be said.Lots of people take someone with them for support, so I can't understand why that would be commented on :dunno: About the dx, I would have thought that if you're told that you could have any condition/illness, the natural thing to do is look into it so you're at least partially prepared for what could be said at appts. As for the things about speech, confusion, lack of concentration and doing things like going to the fridge instead of the microwave, that's all part of FM, it's known as Fibro Fog and can be infuriatingly annoying. Somewhere on here there is a thread called "Fibro Fog Foolishness" where people have put on the daft and annoying things they've done. If you have a read, you'll find these daft things end up being pretty normal for us :facepalm: :facepalm:

At times I think DRs forget we don't have their training and knowledge and don't realise that they can come across so superior and patronising :evil: I'm not sure what else to suggest :? Might it be worth contacting the rheumy for a better explanation of what she said in the letter?? Or see if you can see another rheumy who might give you a better explanation?? I can imagine how unsettling it can be to be asked how to treat something by a DR, you'd expect them to have found out about any potential dx's so they'd have an idea about what to do. There is some decent info on the main site here, and the NHS site has some info as well that could be helpful to you and your GP. :goodluck2: :goodluck2: with your appt :hugs: :hugs: :hugs:
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Postby sjc » Sun Dec 12, 2010 10:35 am

hello there, hope u ok 2day. Glad u find this forum. The more support u get with fm, the better. I went 2 a pain clinic at my local hospital to be diagnosed with fm. Do u have a pain clinic at ur hospital? If so, ask ur gp 2 refer u it and say that ur pain is severe u need specialist treatment. Dont just rely on gp's as they would throw medication at u and nothin else. Rheumatoligists r just trained in how 2 deal with disorders like arthritis and lupus, but a pain clinic knows about fm. A good pain clinic can offer u a pain consultant, group therapy, hydrotherapy, counselling, specialist medication, physio...some offer tai chi or accupuncture. Hope u feel better søon. Take care. :goodluck1:
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Re: Please advise as I don't know where to turn

Postby denys » Sun Dec 12, 2010 8:51 pm

Hi and :welcome: to the forum Flup has given you some great advice as has sjc so there is little I can add to it as Flup has said prit off some info and give it to your GP when you next visit. Hope you start to get some relief soon and any time you need our help just shout, look forward to getting to know you better :hugs: :flowers:
Denys

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Re: Please advise as I don't know where to turn

Postby ickleangeleyes » Tue Dec 14, 2010 3:12 am

:wave: everyone, I'm pleased to of met you and I hope you are all well.

I'm doing a lot better emotionally and a lot of that is because of you, thanks so much for your advice and your time. When I wrote my first post I just felt complete and utter despair.

There is a pain clinic a few miles away, so I will ask my GP about it on Friday. She may even know of one that's closer or at least easier to get to. I'm also going to ask her about the FM clinic at Guys hospital as they treat NHS patients. I've got some info printed off already & I'll be taking my hubby along with me for emotional support as well.

Thanks again & take care xx :hugs:

P.S. I'll let you know how it goes
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Re: Please advise as I don't know where to turn

Postby FluppyPuffy » Tue Dec 14, 2010 10:34 am

:fingerscrossed: :fingerscrossed: for your appt, hope it's the start of you getting the help and treatment you need :goodluck2: :xmasdance1: :xmasdance1:
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Re: Please advise as I don't know where to turn

Postby denys » Tue Dec 14, 2010 11:06 am

Hi ickleangeleyes glad to hear you are feeling a little better about things and goodluck from me as well xx
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Re: Please advise as I don't know where to turn

Postby fibro-lu » Tue Dec 21, 2010 7:53 pm

hi all
:wave:
glad you feel better

and thank you all for your advice too

might take some for myself, like going to a pain clinic (if i remember)

my gp might have even suggested himself, but can't remember

my gp does encourage me to check things out on the net

they can't know everything, and give us only 10 min,

but last time i was so :?: my gp spend with me double the time and appologiesed (!) that he was sorry not to have more time etc (and me appologising for taking so much of his time but appreciate it very much etc, well, one of those days .... :roll: )

best is to have a sympathetic gp and then it's team work

which reminds me that I moved home and it is now outside my gp's area and I don't want to find a new gp :cry:

haven't told him, any suggestions from anyone how to find a good new gp
(will try to remember to start new thread, please remind me if i forget)

lost track of time and place
all the best for you appointment

Lu
Last edited by fibro-lu on Tue Jan 25, 2011 11:15 pm, edited 1 time in total.
all the best :cow-wave: Lu
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Re: Please advise as I don't know where to turn

Postby denys » Wed Dec 22, 2010 3:32 am

Hi Lulu I have answered you on your other post :hugs: :hugs: :flowers:
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Re: Please advise as I don't know where to turn

Postby cassey » Wed Dec 22, 2010 6:29 am

Ask ur gp to refer you to a pain managment team they will take it from there. Good luçk :goodluck2:
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Re: Please advise as I don't know where to turn

Postby cassey » Wed Mar 09, 2011 8:04 pm

hi, iv not been on now in a while. i was just looking at some of the topics,and came across yours. u mension the knot in the top of your buttock,i have the same problem along with other things going on.as for the rummy reading your experience is very simular to when i was diognosed.its like hear is ur diognoses now get out lol.as for the g.p iv given up now going back to them its a total waste of time,all they do is increase my meds that makes me feel even more of a zombie.i went to the pain clinic and they recomended the pain program,so im waiting for an appointment. ill let u no if i think this will help. please dont feel alone we are all in this together,and until the g.ps except this is real.we will have to battle on. take care cassey
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