odd sensory symptoms

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

odd sensory symptoms

Postby oldsheep » Thu Jul 04, 2013 10:43 am

Hi,
I've had CFS and then fibro since 1988. I'm now post meno and on low dose HRT for post menopause and very slightly hypo thyroid but not enough for the docs to treat.

Since April 2012 I've had very odd sensory symptoms which blood tests and MRI haven't explained. My clothes on my torso (sometimes legs) feel stuck to me with sweat, but I'm not sweating. My eyes feel runny, but are dry. My legs and knees tingle, my blood pressure goes right up and my pulse slows, and I feel grumpy. This can be all day, or just afternoons and evenings. I've been threatened with pregabalin (although the NHS hates it as it's expensive) and it's been officially labelled as caused by "anxiety". It isn't, I promise.
I can do far less than I could just over a year ago.

The only time the sensory symptoms are absent is when I'm in water, either a shower or the swimming pool. The sun also helps reduce the symptoms. They are at their worst on the frequent grey, breezy days we have here in London.

Doctors look at me as if I'm on another planet, then end up blaming my mental state! All too familiar from my late 80s experience with CFS. I've stopped looking for "cures" but it would be nice not to feel so alone with these odd symptoms - googling has turned up nothing.
There's some reassurance in that too I suppose, but living with it day to day is tedious.

Just wondered if anyone else had had something similar?
Last edited by FluppyPuffy on Thu Jul 04, 2013 11:14 am, edited 1 time in total.
Reason: Made paragraphs a bit clearer for easier reading.
oldsheep
UKFM Member
 
Posts: 10
Joined: Fri Mar 01, 2013 7:24 pm

Re: odd sensory symptoms

Postby not.giving.in » Thu Jul 04, 2013 11:38 am

Yes, absolutely know where you are coming from! I sometimes feel as if cold water is dripping on my skin, running down my back, or it it's severe then I feel as if a bucket of water has been thrown on my leg and I can feel my trousers sticking to me. Then I look and of course it's dry, no buckets, no drips from above and nothing running down my back. I'm still getting hot sweats and other menopause symptoms but don't want to use HRT. The chemical levels in my body are all over the place without adding artificial hormones into the mix.

The trouble with fibro is that it is largely a disorder of the nervous system and a lot of that is sensory. My body lies to me constantly, my thermostat is broken and I feel cold all the time except when I am much too hot. I sweat when I'm cold so this is pretty unpleasant but I need to wear thermal layers for most of the year. I am much better in sunny weather and much better in the warm. Sleep is chaotic and rarely restful and this makes everything else worse. Fibro may be based in the hypothalamus, which is the "control room" of all body function, and my body rarely functions in a cohesive way. All tests come back slightly off and my GP says normal plus 10% is normal for me. Dysfunction is often transient. Kidneys one day, thyroid another, digestive system often.

Neuropathic pain is part of fibro. This includes hyperalgesia - feeling higher levels of pain than tissue damage warrants, parasthesia - inappropriate sensation with or without stimulus, pricking, tingling, numbness, feeling like insects are crawling on you etc, allodynia - feeling the wrong thing for the stimulus, i.e. feeling cold as pain, feeling pressure as pain, feeling movement of air over the skin as cold, mostly for me I feel everything as pain. The water and clinging clothes probably comes under the parasthesia heading. If doctors don't know enough about neuropathic dysfunction it makes life very hard for sufferers. GPs can't possibly know everything about everything, a good one might be willing to read up on it if you can provide a proper source. Consultants should know better than to disparage your symptoms.

You could try asking "Have you ever had a headache?" When they say of course ask to see the test results to prove they are not making it up. Invisible illness is a nightmare for everyone who suffers from it and being disbelieved can be devastating. Stay strong and believe in yourself, you are the only one who knows the complete truth about what you are feeling. Try to keep on speaking up even when you are tired and in pain. Ask for referral to a different consultant if you need to, pain clinics and neurologists are sometimes more helpful than rheumatologists, though that is usually the first referral.

I believe in you. Good luck :-D
not.giving.in
UKFM Member
 
Posts: 36
Joined: Wed Apr 20, 2011 6:32 pm

Re: odd sensory symptoms

Postby not.giving.in » Thu Jul 04, 2013 11:41 am

p.s. Pregabalin didn't help me as I couldn't cope with the side effects, but I do use lower than normal doses of gabapentin - which is cheaper as it has been around longer, and amitriptylene which is cheap and has been around for years. The combination of the two help me to manage the illness.
not.giving.in
UKFM Member
 
Posts: 36
Joined: Wed Apr 20, 2011 6:32 pm

Re: odd sensory symptoms

Postby oldsheep » Sun Jul 07, 2013 9:49 am

thank you so much for the input! I've had some helpful and lovely doctors, but also some bad ones (hence stuck on medication now that I'd rather not be on) and a lot of indifferent ones. One wonderful GP told me they hate cases like mine as they can't "cure" and have trouble with that. They also think it's not life threatening so just go away and deal with it.

I read something about a Welsh or Wales based CFS research doc who recommends co-Q10, vit B and D so I'm doing that for a year to see.

Interesting that you also have the "soaking wet jeans" feeling. The neurologist looked at me as if I were bonkers when I told him that.
They basically did all the tests (MRI, blood, urine done by endocrinologist etc). When it all came back normal, they threw in the towel and started blaming "anxiety". They feel vindicated in that by my having to take sleeping pills, but that was nothing to do with the fibro - it was bad psychiatry from a consultant (charlatan) many years back, so not relevant to the fibro.

Interesting re side effects and pregabalin as it's meant to have fewer than gabapentin?! A friend took both for severe nerve pain and found gaba made her spaced out, pregabalin worked but only for a month, and amitryptaline a little bit. I tried amitryp but it made me feel extremely odd and have palpitations. A lot of stuff gives me palpitations. I can't even drink normal tea and coffee.

French doctor told me to wear support stockings for the dizzy, postural hypotension moments and fatigue, and they do help. In England, they find the whole idea hilarious. I wear them when it's cool enough, as they give me less pain and a bit more energy and allow me to stand for longer.

So I suppose we just have to find a way to have the best quality of life in the circumstances. Good luck, enjoy the sunshine :-D
oldsheep
UKFM Member
 
Posts: 10
Joined: Fri Mar 01, 2013 7:24 pm

Re: odd sensory symptoms

Postby oldsheep » Sun Jul 07, 2013 9:51 am

Ah, too late to edit.

HRT - have you tried low dose bio-identical hormones? They are safer and not synthetic. Oestrogen patch or gel; and oral progesterone.
It's helped me such a lot, including the fibro (despite the way I feel, it was way worse when not on HRT). Just a thought.
I'd defo do it via a hospital consultant based meno clinic though, not a GP.
oldsheep
UKFM Member
 
Posts: 10
Joined: Fri Mar 01, 2013 7:24 pm


Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 16 guests