Had ME for 12 years, plus other conditions. Always had a lot of pain and been in an electric wheelchair for 5+ years.
Went to Pain Clinic about four years ago for help on pain management, I overheard the doctors saying I had all the tender points for Fibro but he wouldn't speak further about it. He also wasn't able to give me any help with regard to pain relief saying that I didn't fit into their remit as I didn't have a neurological condition (er, ME is neurological!) and I was too disabled to be an in patient.
When I mentioned it to my GP he said it was very likely but then had to look it up online and that was the end of it.
A year or so I saw a different GP and she asked what I thought the pain was from, I replied MEand then told her about the Fibro to which she agreed this was highly likely.
This is all very well but I want a definite dx if I've got Fibro. I think it's important that health care professionals know the full story and of course it's important for clarity in benefits.
Where do I go for a definitive yes or no, is it a rheumy?
Sorry for long post and thank you for reading x
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purple-paw
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I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:
I really am so truly sorry to read of how you have struggled and suffered for over that last five years. I have pasted an excerpt below from *ME Research UK which clearly intimates that ME is a neurological illness, as you stated:
*Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities. Early reports dating from 1934 described epidemics of the illness – such as the 1955 outbreak at the Royal Free Hospital in London – but nowadays it is more common for endemic (sporadic) cases to be identified. The World Health Organisation’s International Classification of Disease lists ME as a disorder of the nervous system, under Post-Viral Fatigue Syndrome (Block 93.3, ICD 10th revision, 2007).
I am also so genuinely sorry to read of your dilemma with not getting a definite diagnosis and I would ask your doctor for a referral to Rheumatology and try and ascertain this one way or the other? I want to sincerely wish you all the best of luck and please take care of yourself my friend.
Hello purple-paw, welcome to HU. As Angie says, everyone here is so helpful and there's a lot of knowledge here.
Your first step is definitely to tell your gp that you require a referal to Rheumatology, remember, a G.P is exactly that, a general practitioner, and whilst some of us are lucky enough to have a very supportive one, some are dinosaurs who don't stay up to date , you have a specific condition that you are querying, therefore you need a specialist, that's why they're there.
As for pain clinics , it's a postcode lottery with this, in my area they will only deal with a physical as opposed to Neuro condition, leaving Neuro to....yes you guessed, Rheumatology and neurology. Have you looked online for a Rheumy with a special interest in Fibro in your area, or a hospital with a clinic? You can then request that you are referred to them, I believe that's your right under the patients charter? I'm sure The Author or Ken or one of the other brilliant admins on here could clarify that.
Good luck and do let us know, sending you squidgy hugs xx
Firstly you have to have a referral from your GO to see a consultant but
"You are also able to choose which consultant-led team will be in charge of your treatment, as long as that team provides the treatment you require.
Therefore, if you wish to be treated by a particular consultant for a procedure, you can choose to have your first outpatient appointment at the hospital where the consultant works, and to be treated by that consultant's team – but this doesn't necessarily mean you'll be seen by the consultant themselves.
This choice is a legal right, if you are not offered a choice at the point of referral, ask your doctor why and say that you wish to go through your options. If you are still not offered, or refused, a choice, contact your local CCG."
Your GP may want to ca try out blood tests, etc beforehand to make sure there are no other causes. Good luck and I hope this helps.x
Thank you so much for your replies. Most helpful. I've always been wary of GPs and worry that they'll just think I'm wasting their time in asking for a referral. And I think that a lot of doctors just believe that you get ME so it's likely you've got Fibro too and that since they haven't any real treatments to offer to either of them, then what difference does it make!
Thanks to your advice I will do some research to see if there are any Fibro specialists in my area and ask for a referral to them.
Unfortunately, M.E/CFS isn't regarded as a diagnosis by the majority of Dr's. meassociation.org.uk/2011/0... NICE has apparently removed it from neurological listing. M.E/CFS is usually regarded as an umbrella term for different types of illnesses. I would recommend seeing all of the specialists before accepting the m.e or fibro label. I accepted them for 25 years and went onto develop neuropathy so severe that I can barely type or walk. Nutritional deficiencies caused my illness and lead to mitochondrial dysfunction. Read about this on Dr Sarah myhills website. drmyhill.co.uk/wiki/fibromy... Some of the serum tests aren't great for accuracy. For example, the b12 test. See the bcsh guidelines and pernicious aneamia society. Autoimmune diseases are hard to diagnose. Even when I was drastically low in b12 I was still given the m.e label for years and no treatment. Find out your b12 levels. Also magnesium red blood cell, coenzyme q10, vitamin b3 and glutathione level if possible.
in reply to
Please see reply above purple-paw . Sorry when I was typing above it wouldn't let me tag you.
Wow! Thank you. I didn't even realise that ME/CFS wasn't even an illness, no wonder none of my doctors are bothered about me! I've got horrible neuropathy in my feet which are now permanently ice cold and excruciatingly painful. To be honest I think most doctors don't know how to treat ME/CFS so they just ignore us!
Thank you for both links which were helpful and surprising. 🌺
Your welcome. I had to reply to you because I wish someone had told me years ago. People are sadly genuinely ill but it's not accepted as a diagnosis by many Dr's. sorry to hear about your feet. I just burn non stop in hands,forearms and feet. The supplements, b12 injections and diet that Dr recommends helped get rid of my severe fatigue, brain fog , dizzyness, cold hands and feet. However, the neuropathy pain is still a real issue but the swelling in my right hand has gone. I can cut my dinner again but repetitive texting/typing is still really difficult. I hope that I continue to improve on this programme. My functional Dr said it's possible. Time will tell. The vitamins and minerals have to be in balance. That's why I got a functional Dr.
In addition, other info that might help you is dr datis kharrazians website and books. They have great information and tips. I hope that the above information is helpful.
I better go and rest my wee paws but keep in touch.
There's been a lot written about B12 injections and how they might help in various conditions but there appears to be no gold standard of treatment as there is for other conditions so it's that old favourite Postcode Lottery again.
I hope you continue to improve 🌺
Sadly there doesn't appear to be much they can do for neuropathy which given the millions of people it affects worldwide due to diabetes alone, you would expect there to be something by now.
I agree. Once your really ill, especially long term, i think multiple things go wrong in the body. Therefore, b12 injections may not be enough for some. Although i had a b12 problem, I definitely needed other nutrients and a very strict intensive programme. I agree with what the American institute of medicine said about M.E being a serious complex multi system disease. At least they recognise its not just one problem and dont dismiss it like a lot of Dr's do. My program has definitely stopped my neuropathy pain progressing further and dampened it slightly. However, it's very hard to completely reverse it. I guess it depends on what has caused it or for how long that you went without treatment. I was low in certain minerals too so my Dr said raising them should give me more improvement and might heal it. If he says it's possible then I live in hope. I know healing nerves can take years. Fingers crossed I'm not left with permanent damage.
Thank you and good luck with whatever you decide to do.
Hi purple-paw I'm sorry you have suffered so long but sadly this is the case for many, it takes a long time to get a diagnosis and everything else would have to be eliminated before diagnosing fibromyalgia. The thing is, it mimics so many other things, RA, Limes disease, even MS, so lots of blood tests & once all of those things come back ok, it is then a normal procedure to be refered to a Rhuematologist who would then diagnose you. With saying all of that, I would ask your doctor if that's what you have been diagnosed because I think I'm right in saying, your GP can diagnose you.
If I were you, I would ask your gp for a copy of the report that pain ma agreement sent GP because there will be one and it may well say it on there that they suspect fibromyalgia.
Wow that is weird, they normally write a full report, even down to what they discussed with you. Like I say, it's normal procedure to refer you to Rhuematologist if everything else turn up blank. I would straight out tell your doctor, it's gone on long enough and you want a referal and you don't understand why you haven't been already. Have you had lots of blood tests ? ☺
No, it was very short and not at all helpful. When I first started to have symptoms I was given all the blood tests, MRI scans etc as of course they were thinking MS, Lupus, Adisons but I've not had any follow ups with neuro for years. Had a rheumy consult too but that was years ago now.
Basically just been left to fend for myself!
When I go back to my GP and say I'm in pain they usually ask why I think that is and I say not sure it's probably my ME. But when I say it could be Fibro they've all said that's probably likely yet I don't have a firm dx of Fibro!
Right ok, well i would definitely ask for a referal, like i said, take someone with you aswell, it does make a difference. Only this time when he asks why you have got pain, tell him you dont know and thats what you have come to a doctor for and in so many words, tell him, if he cant tell you, refer you to someone who can. Im not saying its easy, they dont make it easy, for reasons unbeknown but thats why you need someone with you. If you still get no joy, i would say, change your gp if you can.
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Do no how much more I can take 😢😢😢😢😢😢
how do you get the help you need?
I need to exercise but it hurts so much 
see if you can make sense of it or what can i do
