Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

Possibly from the same stable as the neurologist I saw, who identified a classic sign of hypothyroidism, diagnosed me with sciatica and discharged me!

If you start to read up about B12, you will see how important good levels are.

It's amazing what doctors will come up with when they don't know the answer, instead of just saying "I don't know." My worst was the ophthalmologist who diagnosed my son's migraine which made him blind for 3 days as spinal meningitis and insisted I take him to get a spinal tap. Luckily our wonderful pediatrician intervened (despite being an orthodox jew in the middle of services for passover) and suggested we see the neurologist on the way to the hospital. She came in specially to see my ds and diagnosed a migraine, prescribed migraine medication and within hours his sight began to return....all without a spinal tap.

Oh my! We're having people over this weekend. Just for lunch, but a last-minute thing, and it feels like a big deal. Not sure if it is social anxiety or fatigue, or both, but starting to feel really stressed. I'm wondering how I'm going to make it through work next week after entertaining. And I remembered DH wanted to go in to town to see some lighting ceremony this weekend too, and I don't think I can manage both things. I feel like such a spoil sport. I'll probably push through and do both. Only three more weeks before I can take some time off work...

Crap. And now I'm really ill. I hope I'm better by the time people come over, but either way it'll be an exhausting weekend. In lots of pain :(

Oh murmur Have you got some time pencilled in for recovering?

It will be tough for recovery, especially have a deadline at work on Wed and it will be even harder to meet as I meant to do a bunch of stuff on Fri for it but instead lay in bed all day! I may be able to stay home on Thu, though, once that's in...

I'm wondering what's wrong with me. I first thought it was a stomach bug, but now I'm wondering if it's actually something to do with CFS/ME. I started with (sorry, TMI) loose bowels but since then it's just been lots of gas and massive pain in my abdomen. Today, I can manage to stand up for about 2-3 minutes before it hits, and I have to lie down again. I'm reasonably fine when lying down, except for occasional pain now and again, but not as severe as when I get up.

The only time I remember something like this was a bit over a year ago when we took a trip over the weekend and I started work again straight away. Again, I assumed it was a stomach bug, but later wondered if it wasn't some kind of being overworked thing - no one else in the family caught it, and beyond the initial bowels thing (then too) there were no other typical stomach bug symptoms. That one was worse, as I remember I couldn't even move at all - I had to ask DH to move my leg for me to get my foot under the covers!

But I haven't been doing too much lately, other than actually managing to cook, clean the house and do my job. I have not done my two hobbies (both reclining ones) in ages, so still feel like I'm 'below' what I'd like to be doing. But it may be the cleaning. I actually like cleaning, but it may simply be too physical for me :(

Could something like this be a CFS/ME thing? Or is it more likely to be stomach bug?

Oh, BTW, fuzz, meant to say ages ago - thanks for the story of your assessment. Very interesting. I'm really thinking DH may have issues along these lines, although I doubt he'd ever get assessed. But just being aware that some things are just out of his capability from my POV helps. Also wonder if you need the parental input? I can't imagine my parents doing that (never mind the being on another content issue).

Hey, my calcium was 0.02 lower this time, thus right below normal. So I'm booked in for a Vit D test!

Still unsure if I'm recovering from a stomach bug or if this is something else - looks like I'm managing work in the AMs this week, as I have to, but am in constant low-level pain today. DH coming to get me soon.

Murmuration sorry to hear you are struggling (more than usual). I think digestive problems can go with CFS, but of course you must see your GP if you are getting worse, as it could be anything. I find cleaning exhausting too!
There is a diet for IBS which I know was very helpful for a lady I know who has IBS like problems as part of her ME. Its called the low FODMAP diet and is quite initially restricting ( so expert dietition support is needed) in that you have to avoid quite a few common foods such as lactose (milk) sucrose (in orchard fruits) peppers ( but I can't remember what chemical they are). Hope you are feeling better soon.
Katy I am so sorry you expensive private consult was soo unhelpful.
I think there is a problem with reference levels for some blood tests in that the 'abnormal' levels (showing illness) are sometimes quite a bit lower that what is right for optimal health.

I've read most of the thread, and wondered if I could join.
Can I just share a bit of my story? I've had mild fatigue since a life threatening injury 3 years ago, and have had 3 major orthopaedic operations since. I have ongoing disability in my legs so walking is tough anyway. But 17 months ago I managed to go back to my job which has a fair amount of pressure and responsibility. I coped by never going out in the evening, limiting my non work activity.
Then 3 months ago, we moved house and I had a flare of genital herpes. I have had awful fatigue with the post exertional malaise, flu like symptoms, pain, dizziness, nausea.
I'm off work and finally been referred to the regional CFS clinic. My DH has been very supportive, does almost all the housework. However I am the wage earner, he makes very little, so I have got to go back to work. Currently managing 6-7 hours upright time and waiting for occupational health to see me so I can do a phased return. Hopefully. I don't want to imagine the alternative yet tho it's in my mind a lot.

I'm really grateful for the wisdom I've read in the thread of people who live with worse and know more than me. Sorry if what I've written is too long.

Boxofsnails I think the best advice is to not try to do too much too soon. I hope OH can help. I was off work for months and the specialist OH sent me to had very good advice - which was that I should not yet return to work yet (I had been off for months already and wanted to try returning). I did try to go back on a staged return against his advice and I will never know if that is why I have CFS/ME now. In the end I never got back to my original hours.
If you back on a staged return, make sure you don't overdo it or increase too quickly. Take rests when you can ( at work). The specialist said I should not return to work until I was well enough to run for a bus (or similar sudden burst of energy).
Hopefully the CFS clinic can help you learn to pace and may be could help you with occupational therapy (to save energy both at work and at home). Good luck

I'm sorry to hear about your health issues.

Take it from someone who made themselves much much worse by continuing to try and battle and keep going, I think you should be realistic.

I managed to total my health over the space of a couple of years by doing exactly what you're doing, and 25 years later I'm still not recovered.

You need to consider working part time and for your husband to step up and try and earn some more money (easier said than done I know).

It's bad now, but the truth is it could get worse if you don't take a step back.

If you donate to ME research here by the end of today the donation gets doubled somehow. It looks like you can gift aid it too.

fundraising Christmas cards for ME research

Boxofsnails I would agree with the other advice you've been given. Do not push yourself to do more than you can. You need to be very careful to stay within your limits or risk making yourself much more ill. If you are feeling at all unwell, I would suggest you should not be working.

I know it's easy to say and much harder to do. I spent months struggling on while feeling quite poorly and made myself very ill for a good six months. I am a bit better now, and work part time, but still have weeks where I can't work because I have pushed myself too hard when I was feeling OK ish.

Is there any way that your DH could become the main earner?

Hi, may I join? I have been reading this thread but not thought to post! Doh!

I am diagnosed with fibromyalgia. I have an abnormal brain scan but LP and VEPs do not suggest MS so at the moment I am under a "treat symptoms and keep under observation policy" I am taking Gabapentin for the tingling and pins and needles and mostly it keeps it under control, otherwise the facial and tongue tingling would be driving me crazy! I do have a lot of dizziness and achy, tired limbs as well as bowel probs.

My main problem symptom is fatigue. I used to work in NHS (admin) but had to leave about 18 months ago, the long hours and travelling as well as trying to keep the house were just too much for me, I looked liked something out of the Walking Dead! Everyone used to comment on how tired and pale I looked and I feel so ill. I am managing better now, getting a bit more sleep now I don't have to get up for work and just pottering around the house, but even that exhausts me sometimes! I do not qualify for ESA and was found fit for work, even on appeal, yeah right! but luckily we can survive on husband's wage, otherwise I don't know what I would do. Hope to try and get some part time work or do some voluntary work to try and keep active, I am going stir crazy stuck at home all the time!

I cannot believe there are so many suffering with this awful illness, it really is the pits and the response from certain people I have encountered does not help either, making me out to be "lazy" is really not helpful at all, I just with they could live in my body for a month and see how hard it really is.

If you have fatigue, pins and needles and tingling, have you had your vitamin B12 tested and, if so, did the result come back over 500?

These are classic symptoms of B12 deficiency.

Yes, i have b12 deficiency, i have been on injections for 9 years , all my bloods are generally ok, i have treated vitamin d deficiency too

Hyacinth were you tested for CFS too because I have both?

Do you know what the test for CFS is please? I saw a Rheumatologist who did a physical exam (said my muscles were very weak) and a load of blood tests and was diagnosed with fibromyalgia. The blood tests I had were for thyroid, parathyroid, ANA, rheumatoid factor, kidney function, liver function, etc.

Hyacinth, as far as I know there is no specific test for CFS. It is as I understand it currently a diagnosis of exclusion. When I was diagnosed (6 years ago) i was basically asked which was worse the muscle pain or the fatigue- and as at the time it was very much the fatigue and weakness so I got a diagnosis of CFS. I got the impression that if I had not answered fatigue I would have got a fibro Dx! Main be it is more scientific now?

yes, I have doubted the fibro diagnosis as at the time, my main symptoms were neurological and fatigue but over the past couple of months, I have started REALLY aching, especially in my shoulder muscles. I am so stiff in my back in the morning when I wake up, that it is agony to even turn over in bed, never mind trying to get up, but once I am up and moving in about half an hour, I feel a bit better. I also get very achy, restless legs in the evening, especially if I have overdone things during the day so maybe the fibro diagnosis is correct.

I didn't think there was a test for cfs or fm, and that diagnosis is based on symptoms. There is so much overlap between the two that i'm sure many of us are misdiagnosed, and of course there are some who think they are the same thing (or not a thing at all :().

I have most of the symptoms that both share but had a diagnosis of fm rather than cfs because while fatigue is a huge problem, pain is by far the most significant factor. I respond to the fm pressure points, but can relieve the symptoms (to an extent) by using heat and exercise, which i don't think is always true for cfs?

One of the things that confirmed the diagnosis was that all my symptoms disappeared in pregnancy. I've since done some reading though that suggests that can also happen with cfs, ms ra and thyroid dysfunction as well as with fm. There's an interesting article here about cfs and pregnancy. I mentioned upthread that my symptoms seem to be affected by my menstrual cycle, so a hormone-based hypothesis would make some sort of sense, at least in terms of their effect on the severity of symptoms, even if they are not the actual cause of the illness.

x-post there!

I guess until there are specific reliable tests available there will always be diagnostic uncertainty. I suppose it also goes with having an illness defined by symptoms - which themselves can vary. Even fibromyalgia is called a syndrome - FMS- syndromes are a collection of signs and symptoms often found together I think. I am hoping science will bring better definitions tests and understanding - and more importantly useful treatments!

Yes tested is not the right word at all, I meant really whether you had seem CFS specialist and considered it.

With your symptoms, if you go to a rheumatologist you'll be diagnosed with FM, if you go to a CFS specialist you'll be diagnosed with CFS.

I was diagnosed with both as are many people..