fibromyalgia

[zasif1]

i have pain for last 5 month includes 50 gp appointments 15 time ambulances and 12 times hospital and results is zero

[Hazel_Angelstar Administrator FMA UK Staff]

Hi zasif and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

Do you have a diagnosis of fibromyalgia, or are you still trying to find a cause for your pain.

[Elaine200756]

Hi Zasif, I feel for you. Did your GP prescribe any pain relief for you? I hope so. It can be so frustrating and even embarrassing not to have the answers but hang on and don't give up.

You will find much support and kindness here xx

[zasif1 in reply to Elaine200756]

Yes i have my own pharmacy of painkillers now

[Elaine200756 in reply to zasif1]

Hope they help Zasif 🤗

[zasif1 in reply to Elaine200756]

Thank you

[Elaine200756 in reply to zasif1]

You are so welcome Zasif. Take care 🤗

[Sarahvit]

Hi zasif,

I feel for you. I have had fibromyalgia and other chronic conditions that tend to go along with it and age for 30+yrs was diagnosed in 94. It is a very frustrating thing to go through. In my early years after being diagnosed I did a lot of research on it and got involved in different research studies in hopes that it would lead to a cure. It was a little known diagnosis back in the early 90’s. Have you been diagnosed with fibromyalgia? There are other diseases that can have similar symptoms and PAIN. Generally a rheumatologist or neurologist (it has changed over the years as to what specialists you should see) to confirm the diagnosis by ruling out other diseases. There is a controversy about the FM/a test by Epic Genetics in California USA. I learned or herd about the controversy after having it done as part of a study I got in. I was like “I never herd about this test before, this should be a test done to confirm fibromyalgia”. It gave me a peace of mind seeing it on paper. Hang in there you are in a supportive group here. I’m going through a similar situation with a weird pain in my upper right back that goes above an beyond the fibromyalgia. I have been through PT x3 different agencies focusing on different areas throughout the last 5mos. Have had MRIs of my lower back, upper back then a week latter my neck. Been to a spine specialist, nerve conduction test which came back normal which I knew that there wasn’t any nerve damage in my arms. She said that there are a lot of pieces of the puzzle that need to be put together. So she wanted me to see my primary care physician, endocrinologist and neurologist. Been to the primary doctor who thinks it is my medication and didn’t think I needed to be on tramadol and prescribed Cymbalta which I had tried in the past and it didn’t work. Been to the endocrinologist, had ultrasound (had thyroid cancer in 05) of my thyroid area, had bloodwork done which everything except for TSH was very low off the chart and my vitamin D was high off the chart. I see her on Monday but got the lab results through LabCorp. Haven’t seen the neurologist yet that appointment isn’t until January. So it has been pretty frustrating. It is like I just want them to find something that can be fixed. Sorry for rambling on so long but I get it. Hopefully someone will be able to share some insightful information that will help us both. ❤️🦋

[zasif1 in reply to Sarahvit]

Oh sorry to hear, i believe drs dont want to help because they believe computer and tests only. These pains dont show in any test , i hv same pain but dont agree with the way of treatments all around, drs and nurses are becoming reboots, they just spending hours to have pay but not interested to cure.

[zasif1 in reply to Sarahvit]

I have now my own pharmacy in room with lots medicines that tried every pain killer and anti depressant acupunctures , exercise that i cant do that with little movement i feel drowsy dizzy breathless , no bath for 5 months , cant brush the teeth, cant wash face , cant walk for little that start to feel panic, every test done and nothing in tests, at the end drs have answer anxiety and depression, or other side referrals, but I believe nothing they will do on further on appointments, they just pass the time with questions and see how to send you back to patient from out of room , My rheumatologist and pain clinic are on wait for many months and will see them in further many months and i believe nothing they will do in-fact they pass the time and enjoy. Lying on bed is all the time bad but no help is available because in E&A they just put on wait for many hours than blood test than strike than much more, in gp they have 10 minutes to use computer and ask you and to print outs and to chek pulse, I personally believe only injections can help to have at least for peace full breath but all they decide not patients , it’s became sin to be ill.

[desquinn Partner Volunteer FMAUK Trustee in reply to zasif1]

"i believe drs dont want to help because they believe computer and tests only. These pains dont show in any test "

I am not sure what your expectation is here. Doctors can only give treatments that they have available AND that they think will work AND will not likely cause long lasting harm. These last two elements are about risk mitigation against its benefit.

At the moment drug treatments on offer are likely to fail or not work well in 60-70% of people they are offered to. So we are already on an uphill struggle.

As to injections being of help, I wonder which ones you mean. lidocaine, ketamine or something else? These again help some people but not all.

The doctors do want to help but can only help with the options and understanding that they have at present. It is much better than it was but could be a lot better still.

[zasif1 in reply to desquinn]

I was replying to some others

[Alb2 in reply to zasif1]

I am curious as to what injections you are considering will be helpful for your symptoms?

[zasif1 in reply to Alb2]

Thank you for your thoughts about injections , as i have taken other treatments so next hope is for this , and only hope give you some peace. Hope you have got the answer what you actually raised.

[Dizzytwo in reply to zasif1]

Hi there, but what injections?

[Sarahvit in reply to zasif1]

Thank you xasif1. I’m sorry but I am having a hard time comprehending what you are saying. It is on my end. My vitamin D level is too high which can cause confusion, nausea and other issues but not the pain in my back. I have decided to not take the vitamin D until I feel better. I hope you will be able to gain energy and feel better soon too.

[zasif1 in reply to Sarahvit]

Ok

[Dizzytwo]

Hi, may I ask. Have you actually been diagnosed with fibromyalgia?

[Judithdalston]

have you had vitamins/minerals in blood tested eg ferritin, folate, vit B12 and vit D at least? Gps often believe very low levels, in range, are acceptable when they are not for all. My fibro is not as bad since i went with thyroid health protocol to supplement these to much higher range levels, ( I am hypothyroid) but I do have 40 plus years of spine problem pain too that I control/ moderate with regular gentle spinal manipulation by ex-McTimoney trained chiropractor.

[zasif1 in reply to Judithdalston]

Yes my dear my every test becoming fine , d level is high enough, folate and folic b 12 is also fine, thank you for feel about me.

[Dizzytwo in reply to zasif1]

Hi, you may have missed my earlier response. But have you actually been diagnosed with fibro?

May I just say, you must have a fantastic doctor. You say you have had 50 GP appointments in 5 months. Like many around the country I have been lucky to get 5 appointments in a year.

IMO doctors and nurses do the best they can for us. There is no cure for fibro. They don't know without doubt what causes it.

So if all your tests are coming back ok what exactly do you expect them to do?

You say you have called the ambulance service 12 times may I ask why please has tests have shown your ok and not in a life threatening situation. The ambulance service is for life threatening emergencies. again only my opinion.

Fibro is not life threatening. You may feel like your dying. But your not. Not sure if you have fibro or not. But what ever your problem is. I do hope you can find help soon.

Momo

[blowing-in-the-wind in reply to Dizzytwo]

I absolutely agree ...Well said x

[zasif1 in reply to Dizzytwo]

Yes you are right when you think about ambulances, tue pain was about to make die many times in whole body and I was felt like faint, in earlier it was mot understand able many of drug were made me more ill, i had no sleep for 4 months just one or two hours, i had less options yes when you say the word ambulance it means some one feels that much bad with health, i can understand every pain cant he seen, finally test are fine, that why drs not understanding that their education not allowing them to do some things

[Dizzytwo in reply to zasif1]

Sorry I don't understand. Do you have fibromyalgia or do you just think you have fibro.

I only keep on asking because if we don't know we can not offer the appropriate advice Or suggest what may help you.

[zasif1 in reply to Dizzytwo]

What is test for confirm fibro ?

[Dizzytwo in reply to zasif1]

There is no test for fibro. I hope I am not been rude. But may I ask why you joined a fibro forum? You are very welcome. But I am unsure what kind of support you are seeking.

This is a forum for people who suffer from fibro. Yes many have other health problems. But their main problem for many is fibro related.

[zasif1 in reply to Dizzytwo]

Thank you for considering, i have fibro pain for last 10 years in my ribs but this new style pain yet to be decided, however drs easy to say fibro when they are not introducing to give any treatments, this they discussed in last 5 months saying a fibromyalgia but i am not accepting it as this could be inflammatory pains

[Dizzytwo in reply to zasif1]

Hi, if you had any kind of inflamation then it would show up in your blood tests. Which I am sure they would have looked for.

Even though I am not a doctor. I do know fibro does not cause inflammation. So one of the reasons you are told it may be fibro is you are showing no signs of it been anything else.

Who told you that you had fibro was it a GP or have you seen a rheumatologist?

Many many people with fibro believe they have other problems they think it cant be fibro.

I myself have suffered with fibro for 40yrs and I can tell you from own personal experience. Yes you can suffer very badly with many things going on in the body with no explanation. And extreme tiredness because of pain and lack of sleep can also cause depression and anxiety/panic attacks.

So if your GP says you have fibro I would be inclined to believe them. In the future other things may show up in tests but right now that's not happening.

Momo

[zasif1 in reply to Dizzytwo]

Yes shows in blood an inflammation but drs dont have medicines yet now , lets c for next levels of drs

[Dizzytwo in reply to zasif1]

Are you saying fibro shows in the blood ? Or are you saying You are showing inflammation in your blood for something else ? Sorry but struggling to understand . Fibro does not show inflammation .

[zasif1 in reply to Dizzytwo]

As you know fibro doesn’t show in any test this is with for about ten years in ribs and medicines work for it, other side blood test just show inflammation but dr cant find why it is and they are not just to put on referral and waiting lists so no medicine work just ibrufen or neprxen work a little but i cant chew 110/12 tablets a day

[desquinn Partner Volunteer FMAUK Trustee in reply to zasif1]

Some of your replies are open to interpretation so not sure what you are meaning. Fibro will not show in a blood test but if you have inflammation then it will show in a blood test. Unfortunately when it does show it can be non specific. But if it is a condition that is causing inflammation then it is very likely that the doctors will have meds for that. From NSAIDs to biologics depending on the condition.

There are also treatment options for fibro but your responses do not help with providing advice. After reviewing the thread once more it is not clear you have actually been diagnosed with fibro as opposed to suspecting you have it. You do not say what you are taking or have been prescribed.

[zasif1 in reply to desquinn]

Fibro was told by drs about 10 years that only in ribs.

Inflammation is is high in blood but ct exray ultrasound not showing.

I have no powers in arms so many spells and writing issue hope you will mange with it

[desquinn Partner Volunteer FMAUK Trustee in reply to zasif1]

"Fibro was told by drs about 10 years that only in ribs."

If you mean that you were diagnosed by a doctor 10 years ago then thank you for answering. However, fibromyalgia would not be diagnosed with the presentation of pain only in the ribs. This would not allow in any of the diagnostic criteria that has been used for fibro. You can find the current diagnostic criteria at fmauk.org/acr2016

Inflammation markers as I said before are a blunt tool. They can indicate a number of things or next to nothing but they do not indicate fibro. Understand about the writing issues now. Phones and pcs are quite good at dictation now if speaking your posts would be easier.

[zasif1 in reply to desquinn]

Yes fibro was not stopping with any medicines that time after every few months a a burning paon was starting for many days and no pain killers were working on it , now a medicine controls this and this stops easily other wise this spread from ribs to wings or thighs and doesnt mean every face is same. That ur or other fibro should be same

[Dinkie in reply to Dizzytwo]

I echo that Momo - I phoned my GP surgery and asked to make an appointment with my doctor. There was silence at the end of the phone then the receptionist said you not a regular are you - your Doctor retired years ago😂🤣. I’ve had the odd telephone consult with duty doctor but hadn’t needed a face to face with my own GP.

[zasif1 in reply to Dinkie]

That means you never get ill and you were spent healthy life.

You just did what you want , hope you will be better soon

[Dinkie in reply to zasif1]

Really not sure what you are on about. I have fibro, osteoarthritis and diabetes.

[zasif1 in reply to Dinkie]

Ok

[Judithdalston in reply to zasif1]

So vitamins and minerals in upper half of range, not just ‘ok’ according to doctors?

[DoubleMalibu]

Has a Dr said you have fibromyalgia?

[zasif1 in reply to DoubleMalibu]

Yes i have fibro pain for last 10 years in my ribs but this new style pains for last five months and drs happily say could be fibromyalgia but i know how fibro react so this time this could be inflammatory

[Dizzytwo in reply to zasif1]

Hi, you say you have had fibro pain for 10 yrs in your ribs. Fibro pain normally spreads in all different parts of the body not just one specific part of the body ?

[desquinn Partner Volunteer FMAUK Trustee in reply to zasif1]

"could be fibromyalgia" and "know how fibro react" are confusing statements. If you search on this community or other fibro communities you will find so many people with AI conditions as well as fibro and they cannot tell whether the pain is fibro or arthritis for example.

[zasif1 in reply to desquinn]

Fibro also a bad pain and happening to me for last 10 years in ribs and fibro never stops with rest,

About new pain for last 5 month upper backand shoulders stops with rest but with little movement this increases just as i wash face so feel breath is less heart is high and will more walk more this starts like panic and calm after two hours of bed rest ,

That means just to stay on bed and dont move alot

[desquinn Partner Volunteer FMAUK Trustee in reply to zasif1]

sorry do not understand your response to my points.

[Dizzytwo in reply to zasif1]

Sounds like you may be suffering from anxiety and panic attacks. Has your GP suggested this to you at all?

May I ask do you have family to help you? I don't know your age but could some of your health problems be age related maybe?

[zasif1 in reply to Dizzytwo]

When any thing worse with health anxiety is also relate automatically , wash face and until you get restless and get panic , its good conclusion.

Age in thirties , i am student of law in masters

[Dizzytwo in reply to zasif1]

Thank you for sharing that information. All I can say is I hope you find a solution to your problems. Good luck.

[zasif1 in reply to Dizzytwo]

Thank you

[zasif1]

yes, this may be every face is different, in my case this was in ribs than was to move down and up like burning,

[DoubleMalibu in reply to zasif1]

Has your GP referred you to a rheumatologist for a definite diagnosis & advice?

Or has your GP confirmed fibromyalgia diagnosis in the local Gp surgery?

I think if you could clarify this, then more people could possibly help & understand.

Kind regards 😊

[zasif1 in reply to DoubleMalibu]

Yes fibro was told by gps and in hospitals

[zasif1 in reply to DoubleMalibu]

Yes rheumatologist will see me next year after start of pain about a year hopefully

I was seen consultant who diagnosed fibro about ten years ago ten years ago

Next going to see pain clinic next month

The pain was started after lifting luggage and on train station got unwell , which yet drs not understanding, may be pain specialist will understand if not yet until now!