Hello all

[M1CAN18]

Hello thank you for allowing me to join your site.
I have a few questions as I’m thinking I have untreated fibromyalgia but unsure where to start did any of you self diagnose then see a GP etc or did your GP/health provider tell you it could be fibromyalgia first.

I’m booked in to see my GP but I’m not great at doctors and they usually rush me in and out so fast I’m unsure what just happened.

Any of your experiences would be great for me if possible.

Thank you in advance.

 

[BlueBells]

Hi @M1CAN18

Welcome to the forums.

My mum told me advice I've always adhered to. When going to the doctor, write everything down! This way you won't forget, and even if they rush, just say, "hang on, I also want to ask about this." It is your appointment, you are there for a reason.
We are all different.

Browse around the forums, and see if anything sort of sits right with you. As I said, we are all different.

Best of luck with the doctor.

 

[JamieMarc]

Hello and welcome @M1CAN18
I was only finally diagnosed after seeing pretty much every specialist imaginable -- orthopedist, neurologist, infectious disease, hand surgeon, another orthopedist, another neurologist, all sorts of radiology and nerve testing, physical therapy, etc -- and when no one could find the cause, I was ultimately referred to a pain management specialist and diagnosed by a pain management/neurologist at that facility. Before that, I never even knew much about fibromyalgia and rarely ever heard of it.

 

[sunkacola]

Hello thank you for allowing me to join your site.
I have a few questions as I’m thinking I have untreated fibromyalgia but unsure where to start did any of you self diagnose then see a GP etc or did your GP/health provider tell you it could be fibromyalgia first.

I’m booked in to see my GP but I’m not great at doctors and they usually rush me in and out so fast I’m unsure what just happened.

Any of your experiences would be great for me if possible.

Thank you in advance.

Greetings and welcome.

It is unwise to self-diagnose fibromyalgia or anything else. You may have something else, or several other things, which can be and need to be treated. Unless y ou get tested for all of the things which can cause fibromyalgia symptoms you won't know and you run the high risk of not getting an accurate diagnosis for your symptoms.

See your GP first and don't allow them to rush you. Go in prepared in the following way:

1. Have a list of all of your symptoms written down. Write them down in brief form. Say, for instance, "my legs hurt all the time with sharp stabs in my calves and it's worse at night." Do not elaborate on this.
2. Be ready to tell the doctor when each of your symptoms started. Again, don't elaborate. Say "about 6 months", don't go into details about why you think it was that long and so on.
3. Just the facts. Don't go into emotions.
4. Ask to be tested for the various things that might be causing these problems, don't just accept pain medication and be sent on your way.
5. Take notes if you feel you might not remember what the doc says, or take someone with you who can take notes or who will remember.

Usually a diagnosis of fibromyalgia cannot be made until at least some of the other things that can cause the same symptoms have been ruled out either by testing or by your not having some specific symptom that you'd have if you had that syndrome or disease.

You are at the beginning of this process. Be patient. With luck you will know in a few months, but don't expect to get answers in a few days. Some of us waited years to get a diagnosis, but things are a bit better these days and it usually doesn't take that long. Maybe with even better luck you'll find out you don't have fibro, and what you do have has an effective treatment.

 

[Ian waxman]

Hello thank you for allowing me to join your site.
I have a few questions as I’m thinking I have untreated fibromyalgia but unsure where to start did any of you self diagnose then see a GP etc or did your GP/health provider tell you it could be fibromyalgia first.

I’m booked in to see my GP but I’m not great at doctors and they usually rush me in and out so fast I’m unsure what just happened.

Any of your experiences would be great for me if possible.

Thank you in advance.

Hi!what symptoms have you been getting?why do you think it’s fybromyalgia?have you been diagnosed before?please let us know and we can help you.thanx and take care

 

[Ian waxman]

Hello thank you for allowing me to join your site.
I have a few questions as I’m thinking I have untreated fibromyalgia but unsure where to start did any of you self diagnose then see a GP etc or did your GP/health provider tell you it could be fibromyalgia first.

I’m booked in to see my GP but I’m not great at doctors and they usually rush me in and out so fast I’m unsure what just happened.

Any of your experiences would be great for me if possible.

Thank you in advance.

Hi!gad you’ve joined you’re in good company.what conditions are you getting from fybro.did you tell the doctor you think you have fybro?doctors haven’t a clie when it comes to diagnosing fybro believe me.i’ve suffered for 25 years.go back to the doctors if you believe you’ve got fybro be very firm with them do not walk out.insist that all your ailments are leading you to believe it is.they’re not trained in diagnosing fybro.i asked at my doctors who specializes in fybro and they said none so that tells you what your up against.try to rest,drink lots of water,2 litres if u can,swimming’s great and gentle walks.dont overdo do it!do a hobby that distracts you.try and get out of the house as much as you can it really helps to be round other people.dont try and explain to them what you have they will never understand.dont be afraid to take meds,majority of us are on meds.its life and we’ve been deal a hard blow.take care and keep at the docs and don’t take no for a answer and just walk out.take care and keep us informed

 

[M1CAN18]

Think you for the replies,

so I am just awaiting blood test results as doctor has said that it may be low iron or vitamin (D mainly) I went more for pain relief but they said over the counter medication should help.

My symptoms that I’m noticing seem to coincide with Fibromyalgia are I’m really fatigued and tired and if I exercise of even walk down the stairs I’m more tired like I’ve ran a marathon and my whole body aches, the soles of my feet burn and I keep getting cramp like feeling in legs and back. I wake up through the night in pain usually cramping or just feel like I have been beat up.
My hands ache and match the symptoms of arthritis but I have no swelling I also get a similar feeling in the top of my feet but doctor has said this can all be low vitamins as no swellings.
I have real bad diareah too but I do suffer with Bile Acid Malabsorption which the doctor just says well that’s the diareah side.
I also have severe sleep apnea so they say that the fatigue is this hence my issue and my looking into researching my symptoms.
After my blood test and results if no help I’m thinking of changing GP.

 

[M1CAN18]

Hi!gad you’ve joined you’re in good company.what conditions are you getting from fybro.did you tell the doctor you think you have fybro?doctors haven’t a clie when it comes to diagnosing fybro believe me.i’ve suffered for 25 years.go back to the doctors if you believe you’ve got fybro be very firm with them do not walk out.insist that all your ailments are leading you to believe it is.they’re not trained in diagnosing fybro.i asked at my doctors who specializes in fybro and they said none so that tells you what your up against.try to rest,drink lots of water,2 litres if u can,swimming’s great and gentle walks.dont overdo do it!do a hobby that distracts you.try and get out of the house as much as you can it really helps to be round other people.dont try and explain to them what you have they will never understand.dont be afraid to take meds,majority of us are on meds.its life and we’ve been deal a hard blow.take care and keep at the docs and don’t take no for a answer and just walk out.take care and keep us informed

I’m not sure why it didn’t allow me to post a reply to you but I have replied above Hopefully you see this

 

[M1CAN18]

Greetings and welcome.

It is unwise to self-diagnose fibromyalgia or anything else. You may have something else, or several other things, which can be and need to be treated. Unless y ou get tested for all of the things which can cause fibromyalgia symptoms you won't know and you run the high risk of not getting an accurate diagnosis for your symptoms.

See your GP first and don't allow them to rush you. Go in prepared in the following way:

1. Have a list of all of your symptoms written down. Write them down in brief form. Say, for instance, "my legs hurt all the time with sharp stabs in my calves and it's worse at night." Do not elaborate on this.
2. Be ready to tell the doctor when each of your symptoms started. Again, don't elaborate. Say "about 6 months", don't go into details about why you think it was that long and so on.
3. Just the facts. Don't go into emotions.
4. Ask to be tested for the various things that might be causing these problems, don't just accept pain medication and be sent on your way.
5. Take notes if you feel you might not remember what the doc says, or take someone with you who can take notes or who will remember.

Usually a diagnosis of fibromyalgia cannot be made until at least some of the other things that can cause the same symptoms have been ruled out either by testing or by your not having some specific symptom that you'd have if you had that syndrome or disease.

You are at the beginning of this process. Be patient. With luck you will know in a few months, but don't expect to get answers in a few days. Some of us waited years to get a diagnosis, but things are a bit better these days and it usually doesn't take that long. Maybe with even better luck you'll find out you don't have fibro, and what you do have has an effective treatment.

Fingers crossed thanks for the advice

 

[Ian waxman]

Think you for the replies,

so I am just awaiting blood test results as doctor has said that it may be low iron or vitamin (D mainly) I went more for pain relief but they said over the counter medication should help.

My symptoms that I’m noticing seem to coincide with Fibromyalgia are I’m really fatigued and tired and if I exercise of even walk down the stairs I’m more tired like I’ve ran a marathon and my whole body aches, the soles of my feet burn and I keep getting cramp like feeling in legs and back. I wake up through the night in pain usually cramping or just feel like I have been beat up.
My hands ache and match the symptoms of arthritis but I have no swelling I also get a similar feeling in the top of my feet but doctor has said this can all be low vitamins as no swellings.
I have real bad diareah too but I do suffer with Bile Acid Malabsorption which the doctor just says well that’s the diareah side.
I also have severe sleep apnea so they say that the fatigue is this hence my issue and my looking into researching my symptoms.
After my blood test and results if no help I’m thinking of changing GP.

Hi!the symptoms you’ve explained certainly seem like fybro but sleep apnoea is a terrible condition regarding sleep,fatigue,stress,headaches.really makes you feel dread full.pain wise listen to the doc and if you don’t like what he or she is saying tell them.dont just get out the chair and walk.tell them exactly your symptoms and make sure they’re doing the right thing,it’s a minefield fybro and doctors don’t have a grasp on it.i asked my doctor bluntly what training u had in fybro and they said nothing we have to look at the book and be careful not to mix your meds.i have sleep apnoea too and it’s bloody horrible.take care and keep battling.the more u bug the doctors the more results u get.that worked for me but everyone’s docs are different