Tag: Pain

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.

Appointment with the Specialist Pharamacist

Well as the title suggests I have my appointment through for the Specialist Pharmacist at Nottingham University Hospital. This appointment is for us to come up with a plan to reduce my Morphine intake. As you may know I am dependent on & tolerant of morphine. I have been using both Oramorph solution and MST. I firmly place the blame on the doctors who decided they could treat my chronic pain with MST while still treating my breakthrough pain with Oramorph! I can only only say to everyone out there, if you suffer from chronic pain and they want to treat it with morphine, get specialist advice first!

I will be having blood tests to check my Pituitary Gland is producing enough Testosterone first as this is a side effect observed with Males taking over 100mg/day of Morphine Sulphate and can produce similar symptoms as both Fibromyalgia & Morphine dependence which rather complicates things. I am fairly confident my new Pain Management Consultant is doing the right thing, my concern is they want me to completely come off morphine where I would prefer to be restored to my original state. This was having Oramorph in the the house for severe Myofacial & Neuropathic pain and using it maybe a few times a month and most importantly NOT on a regular basis. Unfortunately I know from experience when I’m in this state nothing less than Morphine can help. I do however also worry that my tolerance will either not reduce back to this level or it may take a long long time as I have found it takes far longer to wean off than I had originally thought!

Appointment is in September (NHS)

Pain Management Appointment

Well I had my Pain Management Appointment in Nottingham today. It went quite well and I got the confirmation I needed that the strategy of using morphine for everything was not the correct one.

We have a bit of a plan for the future, which is twofold:

1) To reduce or come off Morphine. I will need to have a blood test to measure my Testosterone levels as through the consultants experience this can become a problem when a male patient uses over 100mg/day due to the effects in the Pituitary Gland. They need to check that the gland is not underproducing Testosterone as this can lead to a lot of symptoms similar to Fibromyalgia. I can hazard a guess that they want to take this out of the equation before treating my “Fibro.” Due to the problems I have with Blood Tests he is going to request a Vitamin D test at the same time as he will probably want one down the line and we might as well get it done at the same time.

2) To address the causes of pain. He wants me to attend a 10 week course of therapy consisting of ten sessions. They have seen a great deal of success in treating people with similar conditions using a variety of knowledge based training about the perception of pain. I’m not quite sure what system they use but it will be one of these CBT (Cognitive Behavioural Therapy) approaches that are around. He said that when research has been done using advanced brain imaging they have found parts of the brain not associated with pain perception have changed into a pain perception role in patients with long term pain. He also said that if I had problems in childhood, there could be a lot of re-wiring to do in my brain, but he still thinks this is the way to go. He also suggested I buy a book which I’m guessing is the basis of this pain course, I will get a link to it on this post as soon as I can and also put it in the Products section on the website.

My slight concern is that he didn’t quite grasp my theory that the problems I have with blood tests, that I have had all my life, point to there being something wrong with my body’s pain system linked to some sort of central sensitisation. However it could be that he thinks that this course will somehow deal with this. Either way if I’m going through a course of treatment and they find the bizarre things my body physically does, other people may find they will be in a better position to recognise this and perhaps get something done, being far more forward thinking and having more resources available than my local NHS Trust. At the end of the day, it’s moving in the right direction and I will only find out by doing it. On the subject of my local NHS Trust, there may be a problem with funding for me to attend this course. Apparently my Trust have a bit of a history of refusing to fund this treatment, unless a patient has had Spinal Surgery. So that could be a problem we will come up against, but we will cross that bridge should we come to it.

So fairly positive stuff, we will see how successful it is and of course I will report back here for you to see. I was in a great deal of pain during the appointment and the journey, however I had run out of Oramorph and I was trying rather unsuccessfully to use MST in its place. I had various overlapping pain problems today and it did make the whole thing quite traumatic to say the least. I do worry about having to travel every week to Nottingham for this course, I know it’s needed and I will try my very best, but it could prove challenging. I will have to see what time of day it is and come up with some sort of plan of attack!

As always feel free to ask questions, I will try and dig the real ones out of the piles of junk mail I get.

Here is the link to the book the Consultant recommended I buy

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