I'm writing this on behalf of my wife, having obtained good advice on HealthUnlocked regarding my own health conditions and hoping to help her via this forum.
My wife is (understandably) somewhat jaded, having exhausted conventional/semi conventional doctors without finding much interest in tackling her condition(s). I gather this isn't unusual.
What I thought to do was outline, as briefly as I can, her history and current status. This in the hope that someone can help perhaps identify what might be wrong / give pointers for exploration. If there are any questions or a need to elaborate, I will.
History (now 50 years of age)
Chronic depression years 12-21. Fatigue arising from that.
Depression resolved itself at 21. However chronic fatigue set in on the back of two viral infections @ 2 years apart in early 20's. Able to work okay but not much beyond that - needed to put the head down after coming home from work. Insomnia would come and go so fatigue could have been been due to viral induced fatigue and/or lack of sleep.
Did a degree and masters in counselling psychology (between 30-40 yr's age) so able to function. But I'd be best described as low energy: have to put the head down at times for an hour / wrecked for the day if sleep interrupted / unable to burn the candle at both ends.
Pregnant at 40 and utterly knackered. Went to Dr. Peatfield in U.K. who feared about my energy to deliver. He put me on a short term medication (Nutri adrenal) and I pepped up dramatically.
Late 40's: tried Inulin which seemed to help with sleep but the effect waned after a year or so so I stopped taking it.
August 2018: hurt my neck carrying heavy bags back from the shops. Pain migrated to back. Went to my husband's osteopath who had helped my husband no end. He reckoned there was nothing from the muscular / back alignment side of things wrong with me.
Went to GP who carried out a wide range of bloods and diagnosed fibromyalgia April 2019.
Went to naturopath: stool sample indicated gluten intolerance / more acidic than alkaline / gut bacteria out of kilter. Gave a herbal remedy to little effect. Covid interrupted that path
Current supplements:
-Vit B12: (on back of bloods of Nov 2018 @ 173 (range 197-771)). No idea how long B12 was below range
-Vit D (on back of bloods of Nov 2018 @ 36 (range 30-125))
- Probiotic
-CBD oil occasionally
-Paracetamol occasionally to aid sleep
-Gluten shield (enzyme that breaks down gluten)
-Heat pads for lower back pain
-Fish oil for dry eye
Symptoms (scored in terms of impact, whether intensity or frequency of occurance)
Fatigue: comes and goes 5/10
Muscle weakness: head to foot, constant 8/10
Sore back: comes and goes, 7/10, chronic rather than acute
Dry eye: 4/10
Nerves in arm / pins and needles right arm, comes and goes 3/10
Memory loss, always there, 5/10
Anxiety: comes and goes 5/10
There could well be two separate things going on here:
- low energy level related
- back injury related
I know it's a bit of a mish mash of stuff and thanks for reading thus far. Is there any sense to be made from it? A direction to travel? Something screamingly obvious we're missing from your experienced perspective.
Thanks
Written by
Tombilina
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Your wife certainly has a lot going on with her health, and I’m not quite sure what it is that you want advice on.
None of us are medically qualified to give advice, and Fibromyalgia has quite a range of symptoms, and what helps one person, doesn’t necessarily help another, and the same applies with Medications.
It may help if you have a look at our main Website at fmauk.org. You will also find the phone number of our helpline there, and a link to our Benefits Advisor also.
Thanks for the welcome and thanks for reading my post. What I was hoping for might be clarified by a brief outline of my own experience with own health issue.
I have chronic kidney disease, diagnosed when I had about 50% function (which is plenty were it that you could maintain that level). The standard treatment paradigm sees nothing much happening by way of intervention until you get to very end stages of the disease. Your GP and your nephrologist will take a fairly backseat kind of stance. I was given a BP med and told to go easy on red meat portion size.
However, the very latest guidelines (2020) from the (conservative and slow moving) US National Kidney Foundation advocate dietary intervention at early stages of the disease. This to slow or halt its progression.
It is recognized, by the NKF, that it will take years before those guidelines will find implementation in clinical practice - paradigms take a long time to change. There are no renal dieticians, for example, to oversee widespread dietary intervention at early stage. They are all working in dialysis centres.
The science behind those guidelines has been around for quite some time however. Some pioneering doctors and some pioneering patients have been already ploughing the dietary furrow with success
There is much talk around diet-as-treatment at early stages on the healthunlocked kidney forum, where self-advocacy is the name game and doctors are seen more as tools in the self advocates hands, than authorities to be blindly followed.
And so to my wife:
"Not a lot to see here" seems to be the reported experience of many who attend GP's with fibromyalgia / fatigue like symptoms. That has been my wife's experience and the experience of folk she has been in contact with who suffer similarly.
So far so kidney diseaselike!
I was hoping that folk here would have pointers (whether from their pioneering doctors or own digging) that wouldn't be obtained down at your average doctors office.
For instance (from a chronic fatigue sufferer in the link you gave me. This married lady has been suffering since she was 9 years old.)
"Then December 2020 rolled around and my doctor and I decided to try B12 injections to help my chronic fatigue and it changed my life".
Now my wife had low B12 (as in out of range low) and asked the doctor for injections to boost it and was refused. Whereas my own B12 has recently become marginal (due to my going on a plant based diet) and my doctor is going to boost via injection.
Doctors differ...
If you arrived on the kidney forum as a newly diagnosed, bewildered and worried CKDer, you would quickly find, by way of inundation of response, pointers in the direction 'dietary modification'. And the general direction as to what kind of dietary modification would soon emerge, again by innundation of response.
Response would often be backed up by pointers to the scientific literature. You would be told for instance that hydration, hydration, hydration improves not only your kidneys blood stats, but the functioning your kidneys. That was news to me: someone who would never touch a drop of water unless it came in the form coffee or beer
I dunno if there are similar "it's a no brainer" steps that people with Chronic fatigue / pain have learned work for the many. Whether diet, supplement, drug, exercise, lifestyle...
I was hoping for a steer, if there were such steps that my wife could take.
Hi Tombilina. All of the above are very similar to what most of us on here have and I don't think anybody has the answers unfortunately. My perspective is that I have had to learn to live with it and try to stay as positive as possible. I allow myself some bad days and I try to manage my stress levels as best I can. I eat very healthy foods almost every day and take anti depressants which seem to help with the pain. I haven't yet sussed out what to do about the fatigue which is really getting me down too but I just tell myself I have to keep going. Sorry we can't be more help but I think the GP is the only one who can really give any guidance.
You have all the same symptoms as myself I'm asleep more than I'm awake I have had to cut my work hrs to two hrs aday as can't cope with any more than that can't concentrate plus I only drive local as can't concentrate to drive forong period's of time I was diagnosed with fybro in2019 I'm waiting on results of yet more bloods tests to cone through. Feel like I'm fighting a loosing battle at the moment.
Supplement wise may I suggest a high strength B Complex, Magnesium and check if the B12 is methylcobalamin rather cyanocobalamin also that it's taken on an empty stomach.
I have neuropathy too and it sounds like your wife may have some sort of nerve involvement going on but that's way beyond me. Best of luck 🍀
Thanks for that info, I'll check my wife's supplements and see what comes up.
Do you have a particular target for serum B12 levels. There's quite a wide spread in the range for serum B12 so one wonders whether folk should be aiming to sit high in the range or is it enough just to get into the bottom of the range?
I'm wondering about her back pain and whether it's a different thing to her chronic fatigue - but where one influences the other such that the two issues become intertwined and look as if they are the one thing
From what I can see it says between150 and 400 ng/L is on the low side, 800 Ng/L high. Where nerves are involved I think it's the higher the better.Your other question regarding anti-depressants, Amitriptyline is often one of the first meds prescribed and used both as pain relief & to aid sleep.
When my wife was originally "diagnosed" with fibromyalgia, it was suggested she go on anti-depressants. She rejected the idea saying that she didn't feel depressed - we're both slow to medicate with pharma.
I'm just wondering though. I take ACE inhibitors for.my CKD. It's a BP med but it's prime function in CKD isn't control of BP, its to reduce protein leaking out damage kidneys and into your urine by different mechanism than BP adjustment
In the same vein: are anti depressants prescribed in fibromyalgia for reasons other than depression
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