confusion about symptoms
I am a 38 year old female.
I have had night time numbness and tingling in both my hands since my late teens but it never caused me too much bother until just over a year and a half ago when I started to also get searing burning pain in my hands several times a night which could only be relived by sitting upright or getting up and walking around. This was around 6 months after starting to garden regularly (20 plus hrs a week) after a career change from learning support in a school.
A friend suggested trying sleeping with wrist splints ( the same type as on this website) I still wear them now but they rarely have any effect. The initial episodes of night pain lasted from July 2015-Dec 2015 (during which time I started working as a gardener full time) several times a week with nights where I had to sleep upright in a chair to stop the pain reoccuring as soon as i fell asleep again. Then the episodes became less and less over the next 9 months to the extent that I only had maybe one or two a month which could be eased just by moving my hands down by my sides. During this time I was sometimes using machinery such as hedge cutters and lawnmowers for days at a time with no increase in symptoms. I did however loose almost 2 stone in weight which did reduce the amount of fluid retention I experience. I did not go to the GP at all about the symptoms as they had seemed to reduce to a manageable level.
In September of this year I changed employment (still gardening) and have used no machinery at all so far but have done a lot more heavy lifting and pulling, digging and raking etc. From the end of September to the time of writing this I have been woken 4-5 nights a week (usually from 2-4am) and on the worst nights almost every half hour unless sleep upright. Last week I'd had enough of the sleepless nights and finally went to the doctors. I told her that I thought the pain and numbness was mainly in my middle ring and little fingers ( i also thought there was no numbness in my thumb and index finger) and she rightly said that it was most likely not CTS, possibly ulnar neuropathy, and prescribed me amitriptyline (10-20mg) for the pain, booked a blood test and told me to come back in a few weeks to report on how the amitriptyline is working. She also did two provocative tests (tapped my wrist and got me to push the backs of my hands together) both of which gave negative results.
I came home and did some research and found this site and did the diagnostic test which predictably came out low at 28% and I also read your information about ulnar neuropathy which seemed more likely. I decided to record my symptoms (and effectiveness of the medication) each night to report back to the doctor. In particular paying attention to what pain or numbness was happening in each finger.
Well....as soon as I actually started to sit and touch each finger during a night time flare up it soon became clear that my initial interpretation of the sensations was almost completely backwards! My thumbs, index and middle finger all go numb and tingly, as does one side of my ring finger (side next to middle). The burning pain is happening in my middle finger and the same side of the ring finger as the numbness and down into my palm and wrist ( sometimes up to my elbow on the right arm on very bad nights) . There are no symptoms in my little fingers at all. The only explanation I can think of for confusing the symptoms so badly is that I was previously just focussed on relieving the pain (by sitting up, walking around etc) and getting back to sleep that I wasn't noticing that the initial numbness in my thumb and index finger. This numbness goes much quicker than the pain, leaving behind the pain and numbness in the middle and one side of index which I assume I was just interpreting as generally coming from the outer side (middle to little fingers).
I am left handed but my right hand seems to be affected more often (or during the last week at least since I've been recording symptoms). I had a severe injury to my right index finger meaning I couldn't use that hand for many months when I was three and my parents can't remember if i was using my right hand more dominantly before the accident. I am left hand dominant for anything dexterous but use both for for most things like lifting and pulling etc. After a particularly bad night there is some residual slight numbness and tingling for 30-40 minutes after waking. I do not get any other symptoms during the day other than what feels like twanging in the palm occasionally. I have a few little pea sized cysts on the palm side of each of my wrists, around where the tendons are. They have been there since my teens. They are not noticeable unless my wrist is flexed, I forgot to show them to the doctor.
The amitriptyline at 10mg for the first week did nothing so I am now trying 20mg from last night. I am due to go back to the doctors in a week's time. I don't think she is going to believe or understand how I've got the symptoms so confused and am worried she will think I am trying to make up symptoms to get a diagnosis. Do these symptoms (the correct ones) sound like CTS or ulnar neuropathy or possibly a combination of them both?
Thanks for reading, please do ask for any further info you need.
We have long been puzzled by patients who come into the clinic saying they have symptoms in the little and ring fingers and then when we test them the only abnormality we can find is carpal tunnel syndrome rather than an ulnar neuropathy. Your story is a wonderful example of just how unreliable a patient report of symptoms from the middle of the night might be on some occasions. I would not be at all upset with a patient who came back after being told to think about it and said - "Actually I was wrong it's not those fingers it's these". Given the uncertainty as to the right diagnosis here you should get some tests done - nerve conduction studies or ultrasound or both - and then we should know what we are dealing with. JB
Thanks for the encouragement Jeremy. I'm seeing the doctor again on Wednesday and plan to ask for tests when I explain the correct symptoms.
Hi just wanted to update you. I went back to the docs and ended up seeing a different doctor by chance. I explained the symptoms again (and outlined my initial interpretation of them) she said it sounded like CTS and suggested trying steroid injections. She didn't offer any nerve conduction tests. I had the steroid injection on the right wrist (the one with the worse symptoms) on 6th Jan and within two days the nighttime numbness and pain were gone and haven't returned so far despite two weeks of manual work. I am booked in to have the other wrist injected on Friday next week.
So far so good regarding pain and numbness management although I realise the relief from these injections can be short lived. Should I also be pushing for nerve conduction tests to check for nerve damage?
My own personal view is that it is unwise to undertake any invasive (ie injection or surgery) treatment of CTS without documenting it with nerve conduction studies first. However, that is not the general view of the medical profession in the UK nor of the CCGs who purchase care for CTS. The principal reason that I take that view is that patients find their way to me quite regularly with problems after injection or surgery and I am greatly handicapped in analysing their problem if I do not know what the NCS looked like before someone decided to take a knife or needle to it. A somewhat less important issue is that one can, to some extent, predict the likelihood of successful surgery from the pre-operative NCS. These issues are less important for injection however because the risks are much lower and we do not really know yet how well the NCS results allow us to predict the outcome of injection - which leads to the third reason why patients in my care get NCS before injection - I am trying to answer through research that question about how to predict the response to injection.
The fact that your symptoms have responded well to injection is good evidence that the problem was CTS. Whether your doctor has access to NCS will depend on where you are - in some areas there is no service available, most often because the CCG has decided they are not worth paying for, so it is possible the reason they were not offered may be simply that they are unavailable. The only advice I would give is to make sure that if someone is injecting your wrist blind you find out how often they do this and make sure you have a record of exactly what is injected (dose and drug) and the date. People who do lots of CTS injections can generally do them safely, most of the injuries I have come across from, for example, inadvertent injection of the nerve, have been caused by individuals who do not do them often.
On a hopeful note, one injection can last anything up to 50 years - they are highly unpredictable. JB
Hi Jeremy,
Just wanted to give an update. The steroid injections I had in January 2017 continued to be effective for both numbness and nerve pain at night until May, when the numbness returned at a lower level. In November the numbness increased and night pain reoccured. The numbness is now almost at the same level as pre injection but the pain is currently a bit lower and less frequent. The frequency of numbness has returned to pre injection levels. Both however are increasing as time passes.
I was very impressed with the period of relief I got from the injections so went to a GP in December to discuss getting some conduction tests done and the possibility of further steroid injections. My new GP (I moved from Cheshire to Berkshire in September) said they did not think multiple steroid injections, regardless of nerve test results, were a safe option and told me they would make a referral to see a consultant.
This morning I chased this up with the surgery as it has been two months and I hadn't heard anything regarding an appointment. Their secretary told me that the NHS no longer automatically funds treatment for carpal tunnel and that my referral to even see a consultant of have further testing was waiting to be reviewed by a comissioning panel that meets once a month. Is this something I should be concerned about regarding the odds of even getting to see a consultant/ have some tests done, or is it merely a formality? My work placement will end in September and I will be moving on again, so I'm a little concerned that I will have to start the whole process again another health authority. My current GP group is under East Berkshire NHS but my actual GP practice is just over the border in Surrey, I don't know if this has any bearing on speed or likelihood of me getting to the next stage of treatment/assessment.
Any information of advice you can give would be very much appreciated
Regards
Nicola
You are running into extremely bad behaviour by your CCG who are rationing a highly effective treatment for a common condition for completely non-evidence based reasons, sorry! There is no big problem with repeat injections - even the European Federation of Societies for Surgery of the Hand says you can have three in one wrist - and they are surgeons with an axe to grind about surgery. In my view you really need some nerve conduction studies done in order to make a rational decision about what to do next - but short of moving to East Kent you are in a difficult situation. They are liable to cost between 150-300 if done outside the NHS I'm afraid so that is probably not an option unless you have some form on insurance cover. JB
Thanks for your quick reply.
It's strangely a relief to have you confirm that the policy of my CCG is unnecessarily austere, I was completely shocked and quite angry when I was told it had to go to a funding review panel as I know so many people that have had the tests and surgical procedure. I was starting to wonder if I was just completely out of touch with the state of play as its been about 10yrs since I last had any surgical procedure or appointments with a consultant.
I've since checked the Berkshire East CCG funding policies and they have carpal tunnel as an amber low priority condition, stating that even after approval to see a consultant there will need to be another funding application for any surgery. It stated that nerve conduction testing was not a common course of action in primary and intermediate management. Frustratingly it even also stated that steroid injections could be given up to three times as part of conservative care, so I'm unsure why the GP wasn't keen. Although I am happy that she wanted to refer me for further testing etc as I would rather have the tests before any further invasive treatment and I assume, providing those results were positive for CT and that level of severity was not too high, that any consultant would be happy for me to try injections again if I wanted to.
I will have a look into getting the tests done privately, and also check the CCG funding policies of the counties I could possibly be moving to in September!
The designation of treatment for CTS as a "low priority procedure" is widespread amongst CCGs but none of them can produce any satisfactory evidence to justify this. One assumes that these rules are written by people who have not had CTS. The in-fighting between surgeons and others who investigate and treat CTS does not help because CCGs are able to pick and choose opinions from the various sides to support whatever policy they wish to implement. Finally of course we have the background pressure of years of wholly unnecessary government 'austerity' - the CCG budgets are now so tight that they have no option but to cut somwhere. We now spend less on healthcare than almost every other advanced nation and it shows I'm afraid. JB
I forgot to add that my mother had carpal tunnel surgery in both wrists during her early 40s.