Need advice

[Maisie1]

Doctors not sure if it is fibro or not. Can it be in just arms and legs. Really in a lot of pain in these areas, thanks for listening

[Fibrofoggiest]

Hi Maisie, it might be an idea to ask your GP to either refer you to rheumatologist or, if he knows anything about Fibro, to do the trigger point test. This can give a pretty clear idea as to whether you've got fibro as if you have 11 or more points reacting, then fibro is highly likely.

I hope this may help you, and I'm sending lots of positive healing vibes your way

Foggy x

[Maisie1 in reply to Fibrofoggiest]

Love the dog

[Maisie1]

Thanks foggy

[Fibrofoggiest in reply to Maisie1]

You are very welcome Maisie

Foggy x

[Sniffer8]

Hi there, re the trigger point test. Diagnostic criteria changed and now not necessary for diagnosis. I don't have any trigger points but have Fibro.

[JeannieMc in reply to Sniffer8]

...so how are they able to diagnose FM; can you explain please??

[Hidden in reply to JeannieMc]

Hi Jeannie

Welcome to the forum you have come to the right place we are quite a friendly bunch that like to care and share

I hope this link will explain everything you need to know about the diagnosis of Fibromyalgia it's one of our FAQ I have symptoms of Fibro, how is it diagnosed?

healthunlocked.com/fibroact...

Have you checked out our Mother site fibroaction.org where there is a wealth of information regarding Fibromyalgia. If you need answers about, doctors or even medicines, alternative medicines there are sections on the fibroaction site if you hit the link above.

You'll also find sections about all the categories that are there on the right of the screen which is where you can browse through peoples posts.

The creative corner and comedy corner are quite popular as having a good laugh is good medicine. There is also a newly added Pet's Corner for us to post our beloved animals that are there for comfort and support.

You have come to the right place for information, friendly advise and fun if you feel up to it, we all like to blow off steam whether its with a moan or a giggle so please don't be afraid to join in

Looking forward to seeing you around

xxxsianxxx

[JeannieMc in reply to Hidden]

Thanks for your kind words!

I found the 'Mother site fibroaction.org' just now and have looked at it re: symptoms etc. I get quite a lot of 'dizziness' but this is not mentioned as one of the symptoms. Any one else get 'dizzy'? It was the dizziness that became unbearable that led me to taking sick leave and a GP who thinks I have FM. I see a neurologist next week. I got this appointment months ago, before the possible FM diagnosis. I had to change GP practices but it was the best thing I did. Now I have a GP who knows the illness and is trying to help me. I take Gabapentin; 6 a day. It has helped somewhat especially with the dizziness. I have almost all the symptoms but am confused by this 'dizziness'. Thanks.

[Hidden in reply to JeannieMc]

I can understand the frustration Jeannie

Have you had your vit D and iron levels checked?

I get dizzy from being anaemic also get dizzy from certain medications and unfortunately vertigo

Here's a link to a post from the past that may help you?

healthunlocked.com/fibroact...

xxxsianxxx

[JeannieMc in reply to Hidden]

You are a star, thanks. I had Vit D and bloods checked and they were normal. I don't have vertigo as per ENT consultant. He thought it was related to a neck injury from 2.5 years ago. Saw ENT guy before my GP suggested I had FM. So that's not the cause. At least I know others get 'dizzy' with FM. Hopefully the neurologist might have some answers next week when I see them. Thanks for the link!!

[Hidden in reply to JeannieMc]

You're quite welcome do let us know how you get on with the neurologist

xxxsianxxx

[Hidden in reply to JeannieMc]

Hi, it was dizziness and leg pain that first led to my Fibro diagnosis, I had a few loss of balance moments where I would bump into something or fall back. However, I have recently been diagnosed with hypermobility syndrome which can also cause aches and pains and dizziness too, and often goes hand in hand with Fibro. As the others have said, a rheumatologist is the person to see for both of these conditions. If you are very flexible, for example can put your hands flat on the floor without bending your knees, or bend your thumb to touch your forearm, then this is an indicator is could be HMS x

[Maisie1 in reply to Hidden]

My legs are driving me mad. Pain, itching, burning, stinging and sensitivity

[Sniffer8 in reply to JeannieMc]

I had been complaining to my GP for several years re worsening fatigue. I also have constant discomfort, especially in the upper half of my back, shoulders, shoulder blades, neck and both elbows. I can also relate to IBS. I researched the web and consulted a neurosurgical nurse practitioner as I also have a spinal condition that does not explain the above. She gave me the confidence to suggest Fibro to my GP and he agreed this would explain or possibly ME? He referred me to Rheumatology who asked a host of questions and did the trigger point test. I did not experience any tenderness and he said I did not have Fibro. He ordered a pelvic x-Ray and more blood tests which were characteristically normal except low Vit D. My GP was surprised by opinion. At 2nd appointment with rheumatology I was seen by the Consultant this time. He immediately said I do have Fibro and congratulated my research! He said diagnostic criteria changed and trigger point not essential. It seems men are more likely not to have such sensitivity? He doubled my Fultium D to 2 capsules and discharged me! If I'm honest I still have doubts about the diagnosis? It certainly explains many of my concerns but I feel that some clinicians aren't really convinced but feel its a sort of default label that will appease? It's a diagnosis of omission in many ways. I've noticed that many here describe being diagnosed and then discharged?

[JeannieMc in reply to Sniffer8]

"Fultium D to 2 capsules"??

I take Gabapentin, as prescribed by my GP x6 daily. They have certainly 'lifted my mood' somewhat, which is good. They seem to help with my 'dizziness'; as I am not so dizzy anymore (or sick). However, it is the 'dizziness' that makes me wonder if it is not FM? I have all other symptoms, even IBS and tinnitus. Almost constant fatigue, pain throughout body, cognitive problems, sleep problems and so on. What do you think about the 'dizziness' though??

[Sniffer8 in reply to JeannieMc]

Fultium D is Vit D supplement. First Rheumy prescribed one daily and then Consultant doubled to two daily. Could dizziness be a sued effect from medication?

[Sniffer8 in reply to Sniffer8]

Sorry typo! Side effect!

[Maisie1 in reply to Sniffer8]

I don't think you get a side effect from vit d

[JeannieMc in reply to Sniffer8]

No as I had experienced the dizziness months before being prescribed Gabapentin. I have been on another FM forum and met lots of FM sufferers who have 'dizziness' as a symptom; my GP say's it was a symptom too, so I'm fine with it now. I see a neurologist next Tuesday for 1st time and after waiting 4 months and getting sicker, I hope to goodness s/he is good. I will ask for referral to rheumatologist if unsatisfied though. I want to know the following:

1. Did injuring my 5th and 6th vertebrae in my neck, cause my FM or likely to have caused it?

2. Should I be working or not?

Hope the neurologist can help me with these questions!

What do you all think??

[Maisie1 in reply to JeannieMc]

I think you should write a list of all your problems. Most neurologist will cross over int other specialities. Don't hesitate to try and get referred elsewhere if you don't think he is giving you the write outcome. Which hospital trust are you under

[Maisie1]

This confused me because I thought you had to have pain all over

[Ginsing]

Evening You can suffer pain in many ways not either or about it. Many of us have been diagnosed with the trigger point test but now some people are not using it.

Get an appointment with a rheumatologist and they will make sure it is nothing else. Hope this helps

xgins

[Fibrofoggiest in reply to Ginsing]

Gosh, thank you gins, I hadn't seen the new diagnostic criteria, and was myself diagnosed by the trigger point test. That also explains (having read the article on our site) why my rheumy did other checks when I saw him last in 2012, due to see him again soon so I will clarify things with him.

Foggy x

[Hidden in reply to Fibrofoggiest]

Hi Foggy I have now been diagnosed by 3 neurologists and a Rhumatologist. (i`m greedy ) and not one of them did the trigger test. sue

[fenbadger in reply to Hidden]

After all you scoffed on Sunday, too. Shame

How's you Sue?

I didn't know about that change either, we got there by other routes and by elimination. As Sherlock Bones said, "elementary my dear Watson. When you have eliminated the impossible, then whatever is left, no matter how improbable, must be the truth"

It don't 'alf sound like it Maisie but GP must be 100% sure. Gentle hugs.

[Maisie1]

I will try and persuade my GP to refer me

[Maisie1]

I am also getting a lot of sensitivity

[TheAuthor]

Hi Maisie1

I sincerely hope that you are feeling as well as you possibly can be today?

I am going to say the same as everyone else, I think trigger point tests and a trip to Rheumatology are really needed here?

I have pasted the FibroAction website link below for you to have a look at:

fibroaction.org

I want to wish you all the best of luck with this my friend

All my hopes and dreams for you

Ken x

[Huskybike]

Hi I get a lot of arm pain and hand pain told it was carpel tunnel which Aparently is quite common with fibro, I was diagnosed 2 weeks ago with the trigger point test by a rheaumitologist x

[Ginsing in reply to Huskybike]

Morning Husky

are you seeing a occupational therapist to see if they can suggest aids to make life simpler. For example when I was diagnosed I was fitted with hand splints which really help at night. I was having trouble holding a pen but you can get these really fat ones and they make a huge difference. I also find placing hand in warm water in the morning and exercising the fingers and wrist helps keep movement in your hands.

Hope this helps a little

xgins

[fenbadger in reply to Ginsing]

Wow, that's a thought gins. It's almost a D'oh thing. Can't see it not working. Now, please remind me in the morning or I'll forget.

[Huskybike]

Thanks gins I have got some support round my wrists that wear at night but as you say in the morning my fingers are very stiff but they improve through out the day but are very painful, can I also ask if I see an occupational therapist can this help with re housing ? As we live in a private rented flat which suites our needs so have been told we not be considered as priority. However I suffer from anxiety, stress and depression as was wondering if this would count , they say it has to improve my way of life if we were to get a council flat . I am starting cbt today after waiting 7 months so can I put this down as evidence ? Sorry to go on but trying to get through all this Red tape x lots of love

[Ginsing]

Hi Hun sorry I don't no the ins and outs of housing. You can certainly ask to see an occupational therapist and go from there.

xgins

[JeannieMc]

Barnsley Hospital NHS Foundation Trust