Starting to understand.....

All your fibromyalgia experiences, questions and answers.

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Starting to understand.....

Postby Laurendhall88 » Sun Mar 08, 2015 11:18 pm

So still havnt had diagnosis from ruemathorgist but have from gastroenterologist! I was in denial that I could actually be fibro as after hearing just how bad you all are I was no where near, I was having more good days than bad and barly taking medicin just deals with the pain!! This was about 3 months ago!
In the last 3 weeks I am stating to understand how you all feel as all of a sudden my body has given up fighting it! It is tely getting me down just how much pain I am in daily, I wake up as stiff as a board and go to bed no far off it! The fatigue is taking over and my back is horrendous I feel like I am twice my age!!
So I never requested a referral to the rueme as like I said I wasnt that bad and thought no it will just settle down....how wrong was I!!!!
So a lot of people have said all a referral does is get you the diagnosis as the condition has no cure/tablet etc so is there any point in me asking for one! I am on zapin as pain management at the moment or will the rueme be able to give me other things to behind to manage this???

Fingers crossed this is only a flare up and not how mine is to progress!
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Re: Starting to understand.....

Postby ixel-chick » Sun Mar 08, 2015 11:31 pm

Laurendhall88 wrote:the condition has no cure/tablet etc so is there any point in me asking for one!

What makes you think there's no medication that works? People just need to find the right medication for them. Sadly a lot of people stay on the same medication (and just up the dosages) even if it's not improving their lives.

That doesn't mean there's nothing that works! There's tons of options, and hopefully you will find the right solution for you.

Hope you feel better soon!
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Re: Starting to understand.....

Postby carolad » Sun Mar 08, 2015 11:43 pm

Laurendhall88 wrote:So I never requested a referral to the rueme as like I said I wasnt that bad and thought no it will just settle down....how wrong was I!!!!
So a lot of people have said all a referral does is get you the diagnosis as the condition has no cure/tablet etc so is there any point in me asking for one! I am on zapin as pain management at the moment or will the rueme be able to give me other things to behind to manage this???



It seems to vary across the country what the Rheumatologist will do. Mine was useless - the only advice he gave me was to rest more and not to push myself too hard...and then he discharged me :roll: But I know others have had very helpful Rheumatologists who have prescribed various drugs or referred them to hydrotherapy, Pain Clinics etc. So it seems to be hit and miss - if you do get a referral to a Rheumatologist, I hope you get one of the better ones :)
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Re: Starting to understand.....

Postby migrembe » Mon Mar 09, 2015 8:22 am

I have tried every medication that is out there and i am either allergic to them or the side effects are horrendous and the pain relief and fatigue relief minimal. Until a new Dr put me on duloxetine and cocodamol and although not pain free, it is less than it was. As for the fatigue nothing cures that or even helps it. Meditation helps me sleep reasonably well most nights, but not always.

However i have just spent the night unable to sleep as every part of my body felt like a giant bruise.

If your GP is happy to treat you on the diagnosis that you got then you don't need another one, but see if they will refer you to a pain clinic as it may help.

Beverley x
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Re: Starting to understand.....

Postby Cjalex » Mon Mar 09, 2015 8:42 am

Hi my advice would be to go to a rheumatologist for a diagnoses x u will find it hard to get the help needed with out the diagnoses x
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Re: Starting to understand.....

Postby Barbara H » Mon Mar 09, 2015 10:17 am

Yes, totally agree, you need the diagnosis first. Then take it from there.

Some people get medication which helps them tremendously, other times you try all the medication, pain management therapies etc and they do not help, often it is a tolerance issue with the medication, its not that people haven't tried it, just that it does not have the desired affect on them. There is no cure but you have to try every avenue to get some relief, you never know until you try, what is useless for one person may be brilliant for you.
Good luck.
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Re: Starting to understand.....

Postby kizzie70 » Mon Mar 09, 2015 2:26 pm

I had a small stroke end of December and was put on numerous medication especially as my blood pressure could not be controlled. Then I got so much pain in my neck, my GP said it would go away in a couple of weeks, and as I am allergic to all pain relief could only have Paracetamol I was at the end of my tether as the pain started all over my body. The GP then did a blood test and it came back positive for Poly Fibromyalgia so now I am on Steroids. This wa 3 weeks ago, I had another blood test today. The problem is I am Diabetic and the Steroids are making my blood sugars too high, also with all the other medication I am on I am getting so much wind, gas, bloating, and not wanting to eat as feel like I have had a huge meal before I go to bed. The pain is not so bad now so I feel a bit like a fraud, I am very tired and weak though. Do others have problems with the Steroids.
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Re: Starting to understand.....

Postby *Lisa* » Mon Mar 09, 2015 5:44 pm

kizzie70 wrote:Do others have problems with the Steroids.


Steroids is not given to people with fibromyalgia. You have been given this because of the Polymyalgia. If you put the word steroids into the search bar above then you may come accross topics to read that may help you as some people do take steroids but for other conditions.
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Re: Starting to understand.....

Postby rubes » Mon Mar 09, 2015 10:22 pm

I was prescribed Prednisolone for FM from my GP and apart from the weight gain they really do help with the pain.
Couple of times a year I have a booster course of Prednisolone , so for my FM they do work.
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Re: Starting to understand.....

Postby bandj » Wed Mar 11, 2015 6:23 pm

Hi, I have had real problems with finding the right pain medication that I can tolerate. I'm on morphine patches and they don't take away all the pain but they do reduce it to a more manageable level. Saying that, the other night, my body locked right up and I was unable to move. When my hubby started gently moving my limbs he could feel the joints clunking as they freeď up! The pain was awful. Thankfully, that doesn't happen often. :)
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Re: Starting to understand.....

Postby juliecoops13 » Sun Mar 15, 2015 11:43 pm

I feel your pain. In the last 3 months I have had to have 5 ambulances out, as I simply seized up and was unable to move. I have a history of back problems, and the only way I could move around was to be administered gas and air. I have no partner and live with my teenage sons. When it's 3am and I'm stuck in bed, I really don't want to disturb them and end up locked in pain for hours.
Is anyone else suffering like this ?
I'm not usually one to moan, but this is torture....
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Re: Starting to understand.....

Postby divingforPearls » Mon Mar 16, 2015 11:02 am

juliecoops,

serious stuff...find the money and go and see an osteopath. They will be able to tell you if there is anything structurally wrong and then start to help rectify it. Then, if the osteopath and your dr say it's OK, find some more money and go and have a massage to relax your muscles. I know money is not always easy to find, but your body needs some serious attention now. So important to look after yourself, and it sounds like you need some help.
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Re: Starting to understand.....

Postby *Lisa* » Mon Mar 16, 2015 4:43 pm

juliecoops13 wrote:I feel your pain. In the last 3 months I have had to have 5 ambulances out, as I simply seized up and was unable to move. I have a history of back problems, and the only way I could move around was to be administered gas and air. I have no partner and live with my teenage sons. When it's 3am and I'm stuck in bed, I really don't want to disturb them and end up locked in pain for hours.
Is anyone else suffering like this ?
I'm not usually one to moan, but this is torture....



Have you had an MRI? to know why you seize up? I suffer severe stiffness and get "locked" through the night unable to move and have had many back strains. I have now been told this maybe Ankylosing Spondylitis but thought it was fibro. I'm awaiting my MRI results.
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