Bottom half cold, top half hot!

Thought I would do a quick personal post as I haven’t done one for a little while. Due to the hot weather we have had recently it has made a little problem of mine all the more uncomfortable. My legs and feet are always cold, as I live from bed they are normally under the covers, but my top half is nearly always hot! What’s that all about? Its extremely bizarre and a bit of a nightmare to manage. I am not joking when I say I can be dripping with sweat and have stone cold legs. I am guessing circulation may be one of the problems or perhaps some of the nerves problems down by L5/S1? Who knows, it could even be down to morphine dependency and the damage to the pituitary as that messes with the bodies thermostat at the best of times.

When I am out of bed I nearly always wear long johns. A good friend came round for a takeaway and a chat the other day, I took my morphine and had a nice time for a couple of hours. But I hadn’t put my long johns on, that night was terrible, I was up all night in pain. I couldn’t sleep because the pain was so bad I couldn’t actually keep still. Around 4am I took a hefty narcotic cocktail which finally put me out ending the misery. It had been a week since I last had a day out of bed but I was still “recovering” from that, perhaps I did it too soon or should have put my long johns on. To be honest its quickly becoming my number 1 mobility concern and need to think of a better solution, if I wear long johns to much I can get UTI’s which are not nice either. Oh and I forgot to mention on my first edition that it was one of the hottest days this year too when these happened!

Duloxetine is my little wonder drug though, before taking that I had the pain in my legs 90% of the time. Its like a crushing pain, as if your legs are in a high air pressure tank, its really bizzare. However overnight the first dose of Duloxetine flipped the odds and I was 90% pain free in my legs (well as far as that specific pain goes anyway). I always remembered my maternal grandad’s knees sounded like someone was scrunching paper all the time, my mum developed this in her 40’s and I developed it in my teens! Not much hope for me although x-rays have come back clear apart from
Osgood-Schlatter’s Disease as a teenager. Not much hope for those knees then!

It just reminded me of the pain and suffering a simple home visit can bring and the person visiting has no clue of the result, although I wouldn’t really want them to know and wouldn’t change a visit, maybe just my choice of Long Johns!

I would like to hear from anyone with similar problems, especially those in their 20’s or on the same medication.

My Fibromyalgia is a pain in the…….. Legs!

Do you have problems with leg pain? If so, your not alone and I thought I would write a little piece about leg pain as there seems to be quite a lot of chatter on the forums about it at the moment and isn’t something that people instantly link with Fibromyalgia.

Firstly there are many different pain syndromes that effect people with conditions like Fibromyalgia and in you can it is worth trying to classify your pain so you can target you efforts onto trying to solve that particular problem. Two of the common types are Neuropathic Pain & Myofascial Pain and I have had both. I will try and post more information on pain classification soon as you can normally take an educated guess at the syndrome that effects you by the “feel” of the pain, the “location” of the pain, the way the pain “starts” and the way the pain “stops”

I recently posted a reply to the topic of leg pain in the UK Fibromyalgia Forum and you can view my specific reply to the users question here.

My leg pain

I used to have very painful legs almost all the time during the first few years after diagnosis. It felt like there was massive air pressure on my legs like it was crushing them. The pain was more dull than sharp and was like a really bad ache.

My relief

I was prescribed Duloxetine by my Rheumatologist as part of trying to find something that will give me some relief from my pain so it was not prescribed for my leg pain specifically and I had no indication that it would work in that way, which is quite important when considering the placebo effect. Duloxetine is a drug that is in the UK Rheumatologists hypothetical “toolbox” when it comes to treating Fibromyalgia, just like Amitriptyline, Pregabalin & Gabapentin.

As soon as I started taking them my leg pain stopped overnight. Due to a communication problem between my specialist and my GP I was placed on 20mg a day rather than the 60mg a day my Rheumatologist wanted me to be on. A few weeks later I went up to 60mg a day and I had high hopes it would help with other pain upon a dosage increase. Unfortunately this was not the case and I did not notice a significant change in my pain levels anywhere other than my legs. However to this day I always ask to keep Duloxetine on my medication plan due to it solving my leg pain most of the time. It is important to say at this point I do still have a day or so every few months where I do have leg pain but I would consider Duloxetine in my case to be over 90% effective in relieving my leg pain.

More about Duloxetine

When it comes to dosages you can start at 20mg a day and go to 60mg and my Specialist Pharmacist wants me to go higher. It’s an off licence use of the drug but you can still get it if prescribed by a Specialist treating you for Fibromyalgia. Just be aware that its mainly used to help stress incontinence in older women, so when I first got mine my pharmacist gave me a funny look and asked me to go into the consultation room, the following conversation was very very funny and we laughed about the whole thing quite a bit (although he is a great guy) and he prescribed them to me without a problem.

It is also worth mentioning that Duloxetine is also used in the treatment of Myofacial pain in Diabetes patients as well and this may indicate why it can help people with Fibromyalgia. I also suffer from some mild circulation issues, cold hands and feet etc, and of course this can be a complication with Diabetes. Of course this is something I have realised however I have not medical training so take it with a pinch of salt.

Other drugs

You can often take Duloxetine with other drugs for Fibromyalgia. For example you can take Amitriptyline with it too. It is worth mentioning here that these types of drugs work on the Seratonin levels within the body and effect the bodies re uptake of it. Therefore there may be a theoretical risk of Seratonin Syndrome with combinations of these drugs so bear this in mind and consider asking the specialist/pharmacist about it if your being prescribed combinations of these drugs or other SSRI’s.

Also they may suggest stepping your Amitriptyline up to 75mg/day and some specialists may use higher dosages of both these drugs however I think its 75mg max in the BNF for Amitriptyline and 60mg/day for Duloxetine.

Other remedies

The only other thing I find that helped was a warm bath, afterwards I used to put long johns or a long tubiegrip bandage on them (just one layer) to help keep them warm. I certainly notice a firm link between the legs getting cold and the levels of pain they give me. Try and keep your legs warm but remember if your wearing things like long johns all the time heating up genital areas a lot can cause further problems for both males and females when it comes to UTI’s and things like thrush.

Other suggestions in forums are: Bamboo Tea, Kalms (herbal) tablets, a BioMat, TENS machines, electric blankets, hot water bottles, foot spas and even as bizarre as it sounds, and no I have not tried it, a bar of soap under the covers in bed!

Important reminder

It is important to discuss any changes in treatment with you doctor first. They know about your health and what could be perfectly harmless to one person could be lethal for others. This goes for medications (which should only be prescribed by doctors), home remedies and especially over the counter, herbal or complimentary medicine. A lot of people think you can take any herbal medication alongside prescribed medication safely. This is explicitly not the case. This article is based on experiences and suggestions from non medically qualified people so you must always discuss them with your doctor first before trying ANY of the suggestions in this article.

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