I have CFS and fibromyalgia for the last 11 years and recently developed a new symptom which is quite unpleasant. I get extremely cold feet and hands and now my legs have joined in. It’s as though I’m standing in front of a cold air blast. Feels like my clothes are damp and cold. I have had very hot hands and feet in the past which was attributed to fibromyalgia. I went to the GP who has decided to run the usual blood tests and I asked her if she would refer me to the neurologist I saw 5 years ago. She said he probably won’t see me but she will write to him for advice. She said if I was prepared to go privately then I could see him face to face. That makes me so annoyed. My question is once we have a fibromyalgia diagnosis does this mean any new symptoms are blamed on this. I feel very frustrated.
Does fibromyalgia get blamed for ever... - Fibromyalgia Acti...
Does fibromyalgia get blamed for every ailment
Be symptoms should always be checked out and not just blamed on being part of fibromyalgia (however some doctors will do this)
Can I ask why you feel that a referral to rheumatology is required? Cold hands/feet are often connected to circulation issues - and if this is the case then a rheumatologist would not be any help
Hi thanks for reply. It’s a referral to the neurologist I was after as I have lots of tingling and I think it’s nerve related.
Sorry - I've misread x
I have had eye issues, blood pressure, and other things that were treated or investigated separately and dealt with as required. So not everything is put down to fibro but sometimes they will be.
Ultimately there is a professional and clinical judgement about whether symptoms are out with the scope of fibro AND are worthy of further investigation AND are significant. If you had something like irregular heartbeat, shortness of breath or symptom that goes down a diagnostic pathway that suggests some more serious then the professional will progress that. But if in their opinion there is no merit then they will not.
This is not wrong on their part but you may not like it but it still does not make them wrong or unprofessional for taking this view. Second opinions and going private are options but our health service is built and underfunded in a certain way. It is also better able to deal with acute rather than chronic conditions. Also if they do not have the tools or the education / training / information on the condition then they are again limited. With every other condition there will also be patients on the periphery with the same frustration but we have fewer options with fibro. This is not the GPs fault.
"She said if I was prepared to go privately then I could see him face to face. That makes me so annoyed."
Why?? If my car goes into the mechanics and he says £400 for the wheels and blah and I decide that I would rather go to the dealer and get to pay £1000 for the same work then that is my prerogative but I would not blame the mechanic. I Amy get the option of better wheels at the dealer but I may get the same ones and pay for the second opinion at the specialist and they can do no better. If the GP cannot justify the clinical need for the referral then they will not make it and you have the option to go private. These are two different things.
My GP has told me in the past that she thinks I should be seen by the neurologist. She suspects I may have MS. She is a first class GP and I respect her judgement but she says if the NHS won’t give an appointment then the private route is the only option. I have gone privately over the last decade and paid thousands in medical bills and now I can’t work any longer I will struggle to pay the cost of the consultations and scans. That’s why I get annoyed.
I don’t know what your GP is thinking if the NHS won’t give you an appointment for a Neurologist. GPS have referrals to different departments they don’t need permission from the NHS they just book you into the system and you wait for your appointment. If it’s urgent you will be seen sooner than you think.
I was referred last year by my GP. She rang me a few weeks later and said that neurology would not be offering an appointment as they said tingling and pins and needles were caused by fibromyalgia. I think because I had seen a neurologist privately 4 years before with the same complaint and he diagnosed it was caused by the fibromyalgia and not MS then that may have been the reason but I’m only guessing.
That’s why you won’t be offered an appointment with the possibility of an MRI. I had spinal surgery and all went well but my recovery was slowing and my mobility also so my GP referred me to the Nurologey department and after 8 specialist blood tests and 3 MRI scans I was diagnosed with MS.
I can totally understand your frustration especially as your GP suspects MS. I would have thought that would have been enough to warrant a Neurology referral & an MRI.
I have the cold skin on quite a few areas that feels like freezing cold air blowing on it when uncovered and it's actually quite painful. My upper arms are my worst area for this & I think this is from Neuropathy but it's difficult to determine what label is causing what?
It also drives you to distraction as temp control is totally wonky so overheating most of the time but then have to keep covered up as you get the wind from Siberia on your skin while sweating buckets elsewhere 😳🥵
Try to tell anyone who doesn't have any kind of chronic condition and they look at you like you're a total screwball. Keep pushing for that referral x
Oh goodness you have described exactly what I’m getting. It’s very unpleasant. I sleep with just a sheet and wake up either freezing cold or sweating buckets. Very strange.Glad I’m not the only one. I describe the feeling to my husband and he looks bewildered!
Hey I have fibro and have never experienced this but my mum has quite regularly. she has fibromyalgia and polymalagia (think that’s how it’s spelt) she struggles for years to get a diagnosis and its very uncommon but a blood test can rule it out if you flag this to your gp, treatment involves steroids and my mum since having diagnosis and medication is now living a fairly decent life she has more energy than me 😂
Hi Pat,I can relate to your frustration. I've noticed there can be a tendancy with some, not all, GPs to put new symptoms down to Fibromyalgia...not obviously different symptoms but certainly ones that appear to be neurological. I can understand your frustration at being told you have to pay to see someone face to face. Everyone should be afforded the same level of care, unfortunately the system doesn't always allow. It's ok for you to feel annoyed or frustrated or anything else you want to. This is a personal journey. Hope you find some relief soon x
I constantly get cold sweats x
I have a lot of health conditions and started getting the ice cold hands feet and legs about 2 years ago and my dr said it was reynard syndrome. He gave me tablets for it which opens up blood vessels and helps with the aches. It is common in people with fibromyalgia. I also have diabetes and with this I have nerve damage which makes it painful. At night if my feet are like ice I put the shower on my feet or stand in a bowl of warm water.. not hot. Its important that you bring them up to body temperature slowly otherwise it will be painful.
Funnily enough my GP mentioned Reynauds to me
I have raynards and my lower legs also feel as though cold air is blowing on them.My hands have always been cold, also my feet but I find the feeling is worse in my legs.
I have never mentioned this to the doctor.
I have noticed the feeling disappears in the height of summer.
Raynaud's'. I have this as well as fibro. I sometimes don't know what if the the two conditions are causing me problems with my feet and lower legs.
I had nerve conduction tests are it was ok. So its not necessarily awful reason. It has improved, but cold weather, and going back and forth with warm and cold, like at the moment plays things up. Initially had it very bad in my hands as well, but improved a lot.
Hi pat, it's very frustrating when like most of us we have so many different things going on. It's hard to tell what is caused by what. I was diagnosed with fibro and also have raynauds. My hands and feet are extremely sensitive to hot and cold, my skin changes colour from white, pink, red and blue.I also have constant pins and needles, tingling/numbness and itchy/crawling sensations of my arms, hands, legs and feet. Now that I'm suffering with tremors, balance issues and dizziness my GP has referred me to Neurology, however the letter I received from them states they traige cases and if they feel that I need to be seen I will hear from them, otherwise I will hear back from my GP. The letter states that if I havent heard anything after 2 months to contact them.When looking privately I can get an appointment in just 2 weeks time. Whilst frustrating as that is I am just trying to focus on how extremely grateful and lucky I am that I can access medical care without having to get into debt paying for it or otherwise go without any. The NHS despite the underfunding, delays and its problems, we are still truly blessed that it exists.
Keep a diary of all your symptoms and report them to your GP. They can use this as evidence and to assist them with if they fit fibromyalgia or MS.
Hi PatI can appreciate your frustration. The problem with fibro etc is that the nerves are working overtime. So what we get is 'extreme' . So when the temperature drops we feel the cold more and the reverse is true. I get this alternating hot then cold too. I was told I had raynaud's years ago. I do have poor circulation and have had since I was born.
The sweats are a bit like hot flushes. Annoying! I don't know your age, would hormones be playing a part in it? Both raynaud's and fibro are thought to be auto immune problems. Like us all, we want answers and sadly, they are not always forth coming. The answers to my questions were, well, there's not a lot we can do about it. It gets so head banging at times!.
But the weather is getting better and that seems to help a bit. I'm cold in bed... then I'm too hot., and sleep is broken several times during the night... so I never feel refreshed.
If anyone has a solution for that one I'd be grateful.
Like you, I certainly can't afford private health care and if your surgery is anything like mine, I even struggle to get any face to face time as we now have to go through e consult., which isn't really helpful in our case. .
I must admit I try and manage things myself, I don't want to be taking loads of meds daily. I don't mind short term, but not if it's going to be long term. I want rid of it... permanent.
I’m exactly like you in bed. Cold hot cold hot. Feet out of the bed. Feet cold back in the bed. Disrupts sleep. Thank goodness warmer weather is on its way. I’m past the menopause but the hot sweats are very like the hot flushes. My face goes beetroot red!
Bless you, you paint such a lovely picture.! I look in the mirror and there's this old haggard person looking worn out with dark eye circles. Don't know who she is but she keeps following me around every where. Forgive me, I have to poke fun sometimes to make me laugh because most days it's tears.
Oh well, could be worse, I suppose. Take care x
I hate it when you get pushed towards Private. It's not all it's hyped up to be at all.
Private clinics and hospitals are lovely and plush, but, should you have an emergency, an ambulance will be called and you will be shunted off to the NHS. You will still get the bills though.
I have worked in both Private and NHS, as well as being a patient in both, so I've been there, done that! (I was a nurse, I'm now retired.)
Another thing you don't get told about Private, is that you are charged for Everything, from changing bedlinen, through fees for Doctors, Nurses, Anaesthetists, and yet again for MRI, anasthesia, bloodwork, antibiotics, catheters, use of television, phone, or whatever, Look at the bills. A bed in a private Clinic can cost thousands a day on it's own!!
If you can truly afford it, go ahead, but if you have the slightest doubt, don't go there!
Especially right now with a squeeze on living conditions rapidly coming on the back of the Ukrainian war.
What I think I will do is see if I am offered an appointment when I am triaged by neurology at the hospital and if they don’t give me an appointment I will go privately. I’ve looked into the cost and the consultation is £250 for first appointment and £120 for follow up. The MRI is approximately £600. Any other tests I’ll have to see how much they are at the time.When I was working I was in BUPA so went privately a few times but I thought the NHS care was far better although at the moment they are so busy.
Hi. Several people have referred to Reynauds syndrome. My Mum in law had it. Sounds possible. - If you get no joy from the doctor, I would suggest going to see a Five Element trained Acupuncturist. They can approach the problem from a different perspective and tell you what about your body is out of balance. They do this by examining the five pulses in your wrist which I believe is not a skill any medically trained doctor has. Acupuncture is probably the cheapest route, they really talk and listen to you and the needles do not hurt as they are very, very fine. Hope you get the problem sorted soon.
No not every new symptoms is fibromyalgia. A host of other diseases tend to join in but they are separate from fibromyalgia. For instance interstitial cystitis, gastroperisis, neuropathy, thyroid diseases, ulcerative colitis to name a few others that I have joined in are common with fibromyalgia and CFS but are a total separate diseases. Your doctor needs to run tests and if she can’t answer the question needs to refer you to someone who can be it neurologist or rheumatologist. What you have is Reynolds disease if I am recalling or remember right. It is common with fibromyalgia. Are your hands discolored when they are cold? Are you suffering from dry eyes? Google it. I personally don’t have that but know from my 30yrs experience with having fibromyalgia that a lot of conditions go with fibromyalgia but is a separate condition.
You are so right!
The umbrella that covers Fibro just grows, the feeling you are being ignored? Easy to push you to one side, - well sadly that is my view.
As the medical evidence suggests comorbidity is a factor with fibro, yet trying to obtain any further in depth tests for new symptoms seems a very up hill struggle just to get past the start line and normally ends with a recommendation from my GP asking if I have tried Tai Chi!!😒
As the stand in GP said to me a few weeks back, "You need to manage your expectations " the NHS is under extreme pressure.
Usual bloods are the route that take place, yet here again, it is proven that usual bloods do not in a lot of cases give a picture to your symptoms and more in depth
You are so right!As a GP said to me the NHS is now under extreme pressure, "you need to manage your expectations!"
My opinion is once you have a diagnosis, unless anything untoward shows up on your normal bloods, (which normally they do not) the NHS do not have the recourses and you will come down to who they feel is a priority.
Sad as it is this is the reality for some of us, thanks for sharing your experience.
Yes I totally agree. The GP HAS sent me for bloods and an x ray! Probably won’t show anything relevant and I will have to push for going further. The rheumatologist I saw actually suggested I take up golf! I can hardly walk round the supermarket some days never mind a golf course.
You are an absolute joy,
I am laughing to myself, as I see the picture of you going over the same frustration, I am beginning to think that obviously my age is the wrong side of 50 as far as treatment is concerned on the struggling NHS, the odds are against me.😒
I have sadly come to the conclusion that my hard earnt pennies are now going to be spent on private medical care, in the hope to develop a more meaningful life, as my name on this forum highlights my question Does-the-NHS-Work, I had hoped that I would have been knocked to the floor - had my nose bloodied by the numerous, if not overwhelming positive experiences other members on this forum, are experiencing via the NHS.
Sadly the truth is the latter, as most other forum members seem to be a part of the miserable truth that the NHS is F--ked and our health will suffer further, this stark reality is I suppose better to know the truth then sit in hope only to be disappointed by this failed system.
Gotta do it! 🫣 I can understand everyone's frustration with the NHS and include my own however they are under immense pressure in unprecedented times.
We only seem to hear about all the negatives when there are so many superb stories from people's experiences of the NHS.
Read one today about a 4 year old girl with a very rare auto immune illness that knocked her down so quickly, couldn't walk, eat, sit up etc ...
Her parents could not praise the NHS highly enough, calling them an ARMY. 3 Hospitals, 9 departments and all the staff working together for their little girl who has since made a full recovery.
So no the NHS is not F--ked. It's took a massive pounding but it's still going, it's still Our NHS. It's still there for every one of us at the point of need and for that I am truly grateful. ❤️ NHS
ps Consider your nose bloodied 🤣🤣
Would also say that if someone goes out looking for something they will find it especially if it is to confirm thier original bias. Diabetic care is normally very positive because they understand the majority of it. Blaming the NHS for or performance with fibro when we know substantially less on his to treat it is not fair. Yeah they could do better but a forum will always give a foster sample.
Hooray, well done Cheetiecat. you found one. Nice to hear a success story.🙂
🤣🤣🤣
Sadly, the British public have reaped what we've sewn over the last decade or so- the idjits in government can only squeeze the life out of our NHS if we keep giving them access to it by voting them in as the governing party. Opinion given, no more political speak now
It's not about blaming the poor overworked, underpaid tremendous individuals we have, trying their dam hardest to support us, carrying the burden of poor management, not just poor, grossly and badly managed, wasting money. Why do we put up with it?
You have to consider things like the face mask scandal with MP's friends setting up bogus companies, EX Prime Ministers setting up bogus companies lending borrowed money, all paid by the NHS. To profit from a world epidemic, shameful! This is systematic failure and this money could have gone to great use, to save the lives of all the other little 5 year olds.
Because we want to say the system works as it is the only thing we have does not diminish the system of liability, this organisation has failed and the sooner we are all honest with ourselves and ask for better, the system will continue along the current lines.
Whilst this does not help us on this forum to know the issues with the NHS, I am trying to be realistic to the hundreds of individuals on this forum that like me, their hope for treatment may not exist, this condition carries a large psychological state of mind, mental health, we all need to be aware of the pit falls.
Reading Patdoyle accounts of turning up at the surgery with hope, only to be cast aside time and time again is degrading, stomach churning anxiety that compounds any condition let alone fibromyalgia. The poor individuals I read on this forum with diagnosis of this condition in their early life pulls at my heart strings to know they may need to live with this for their entire life, if this broken system is ever to be properly addressed.
This forum is a voice, individuals on here can use their voice by gathering statistics to produce to the government the areas that are falling short, I am sorry but this is the way to do it, nobody knows what is going on unless we tell them. When are we going to start the first forum survey on this forum to hand into the government?
We can make a difference sitting back saying well this is the best we have and its great is not true.
Yes, FM sufferers are not allowed to have unrelated problems, hahaha. In my opinion, a new symptom suggests a new problem or a misdiagnosis. Keep insisting you want referring, and if you are being fobbed off, ask to speak to another GP.
The NHS is overrun and waiting times are long, but that's no excuse for a GP to not do his or her duty to you and refer you on if he/she can't help you in a GP setting.
The GP is ringing me next week with blood test results and to discuss what happens next. She will refer me but says the neurology dept. Has triage system and will only give an appointment to the patients they choose to see. I saw a neurologist 5/6 years ago and that seems to be the stumbling block.
Pre-fibro I wore 2-3 pairs of socks, since fibro that's gone up to 4-5 pairs (3 organic cotton, 2 wool), plus often a hot water bottle. Outside I put small warming things in gloves and shoes if necessary. It's essential for my health and well-being to keep my feet warm all the time.
And like many have said, in my case it's Raynaud's. Raynauld's is a common co-morbidity of FM.
Some fibromites, not just docs, prefer to blame fibro for everything that might be fibro. I tackle each symptom for itself and now manage to get all my "30"? local pains down that way, a higher quality of life.
BTW I do tolerate, and sometimes even need, short sharp cold (cold shower for 1 minute, starting with feet, and whole body cryotherapy. Both of these improve circulation a little bit, but not much. So I can only alleviate the cold with clothing.
Fibromyalgia..what's worked for you?
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My experience with fibromyalgia ( newbie here)
Just looking for some help/advice from fibromyalgia suffers themselves! 
