What to do?

Welcome Introductions
1

So as a newbie, I'll tell you a little about me and what's been going on.

I've suffered from tendon pain for about 30 years, which only started getting worse about 10 years ago, was prescribed anti inflammatory meds after coping with costochronditis for several weeks. Was referred to Rheumatologist in 2011 as I had numerous painful lumps around joint areas, was diagnosed as having Psoriatic Arthritis (PsA) predominantly enthesitis based, and started dmard treatment.

Every year since 2010/11 I've had months of long flares which have forced me into sick leave from work (renal nursing) within the NHS. This year's has been particularly bad with more than normal widespread pain, and crippling fatigue. Saw my rheumatologist in April, and long story short he suggested that this may well be due to secondary fibromyalgia, honestly don't remember him saying that in the clinic, but the clinic letter says just that, and my brain fog has been particularly bad.

But that's it........No treatment offered, no firm diagnosis, seem to be left hanging, with no idea of the next step.

What I have done is slowly increase my exercise ( which I've always done for PsA anyway) swimming, walking and shibashi tai chi, stretches, as my condition has slowly improved.

Left messages with the Rheumatology specialist nurse and rheumatologist secretary to find out what is happening, but no luck with any communication as of yet (a week and counting)

I've booked an appointment with my GP in view of discussing a referral to another hospital as I've sort of lost confidence with my local hospital, and through research have found a few of the London hospitals approach is much more holistic. Also will see if she has any ideas re treatment options.

So folks, any suggestions would be helpful

Louise x

2

Welcome Louise,

I think you will find that most of us got the Fibro diagnosis without help to next steps. My doctor prescribed Tramadol for the pain and told me to eliminate dairy and Gluten. And of course add light exercise. I think what has helped me this year, diagnosed in Feb) is to listen to my body. Rest when I'm tired, work when I have energy and forgive myself when I just don't have the energy to do anything.

I know some of the other wonderful people on this board will have better answers for you.

Gentle Hugs,

Stacey

3

Hi Louise and welcome!

It seems that auto-immune diseases and fibro like to go hand in hand with each other. It seems that most of the people on here end up with an auto-immune disease as well. I'm not sure if it's also true that most people with an auto-immune disease also get fibro but I do know of several people who it is true of.

I think you've been offered some good ideas for dealing with fibro from the people on here. Light exercise, as you can tolerate it, such as tai chi or walking, resting yourself whenever you need to, learn to pace yourself, try to keep stress reduced if you can, get something that helps with fibro pain (you can reduce it but it never seems to go away.) Reading these conversations will help you to learn how to better manage fibro, so I suggest that you keep doing so.

Your GP should also be able to help you with fibro meds and managing it from a medical standpoint. Rheumatologists seem to find fibro too boring to deal with, to be honest, although I'm not quite sure why they feel that way.

Hope that helps a bit!

Hugs,

Petunia

4

Thanks for all your helpful replies, I’ll be going back to work in 2nd week of June on a phased return. I have a fantastic GP and expect she will be helpful with advice on all of this. To be honest I think I’ve had this for years but its been hidden in with PsA symptoms, the more I read about fibro the more unexplained symptoms fit. Thanks again, I will certainly visit often :slight_smile:
wishing all, less painful days x

5

So folks, just a quick update.

Started Gabapentin this week, rheumy still not helpful but the GP is doing ok at the moment.

Went back to work in second week of June and even though on a phased return I've really struggled and my manager is being a ****! lol

The Occi Health doc confirmed the fibromyalgia diagnosis and found many pain areas where I didn't know I had them! ( the rheumatologist hasn't even tried) he and my union rep are backing my request to reduce my hours in a way that will help me.

Had the best nights sleep for simply ages.....I'm calling it the 'awesome sleep' cos it just that unusual lol

6

I would suggest you find a NEW rheumatologist... do your homework and make sure they are Fibro friendly and when you make the appointment tell them you think you may have fibro and would like to be evaluated for just that. I looked online for my Rheumatologist and read the reviews about him and his specialties. Once you go to the appointment you can give them your history but insiston being checked for Fibro. if you like the Dr. then stick with him/her. I do know one thing If I had called the Dr.s office and they had not returned my call in 2 days I would be blowing their phones up...lol... keep calling them!!! You have to be PERSISTENT!!! You have to have control of your health care. Remember you have HIRED the DR.s to work for you if they are not doing their job right or to your standards... FIRE them and hire a new one... and treat each appointment as an interview... if they do not do well in the interview process find another one. Your health is important.

HUGGS, Belinda

7

Thanks Belinda,

Unfortunately here in the UK it's a bit harder and we don't really have much choice on our specialist, although through some research I've found a clinic in a good London hospital with a fibromyalgia clinic that accepts patients from other areas. So Ill give my GP the chance to try the gabapentin route and if I'm not significantly helped by it I will push for a referral from my GP to this clinic. X

8

Oh that is tough... I had no idea.. I guess that is what we here in the States can look forward to with our new health care system... BUT I sure hope not! The first thing I was put on was Cymbalta for pain... then the trazodone for sleep and then Nourotin (gabapentin) I am guessing that was for the twitching and weird things that started happening...I do hope you can get them to medicate you in the right way... and I will say for the record... everyone reacts differently to the meds so what works for me may not work for you.

HUGGS, Belinda .