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The UKFibromyalgia Forums • View topic - Hi All - Desperate after years of chronic pain



Hi All - Desperate after years of chronic pain

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Hi All - Desperate after years of chronic pain

Postby gcwebbyuk » Tue Mar 26, 2013 2:43 pm

Hi All

First of all, sorry for the long post. Secondly, if you manage to read the whole post, try and guess my age...

I have been suffering for around 7 years now with chronic pain. My symptoms seem to match FMS, but no doctor has yet mentioned it directly. I will explain the history of my condition, and hopefully someone may be able to help :oops:

It started years ago, when I went to reach for my towel getting out of the shower. My shoulder locked, and I almost dropped to the floor in pain. I was unable to move my shoulder for several hours, and the pain was, lets just say - bad.

My GP sent me to see a physio, who assisted with mobility. From then on, I suffered with neck and shoulder pain.

A year or so later, I had the same issue, again getting out of the shower - it seems the direct heat on my neck was the main factor. I was prescribed co-codamol and diazepam to relieve the pain and help with movement.

I was then referred to see a rheumatologist. He was not very pleasant to begin with, I think he thought I just wanted to be signed off work when in fact it was the opposite - I wanted to work. He sent me for an MRI scan, he changed his demeanour after seeing the scan and realised that I was not putting on the pain, but in fact hiding the severity of the pain. The MRI showed that I had a bulging disc in my neck which was pushing against a nerve. This was giving me the pain, but also the numbness I was feeling in my arms. He suggested that I increase my medication (naproxen), and he sent me to see a neuro surgeon.

Unfortunately the referral went to a neurologist, who went the whole scenario again, and then realised I was supposed to be seeing a neuro surgeon... several months wasted.

I finally saw the neuro surgeon, who sent me for another MRI. On seeing the results, and that the bulge had got worse, and not better, he suggested that I undergo surgery to replace the bulging disc with a titanium spacer, and to have the vertebrae fused. I was put on the waiting list for the surgery.

In the meantime, I decided to see a chiropractor, who after 12 sessions had made no progress. I then went to see an osteopath, after one session, I started to feel pain in my legs too, so he suggest I not proceed further, but to wait for surgery. My final attempt at avoiding surgery was to have acupuncture. This relieved the pain short term but was not a long term fix (or even management).

In January 2010 I had the surgery. I actually had two disks replaced, as a second (below the first) had also started to bulge. They also noticed the L5/S1 disc at the base of the spine was also beginning to show signs of advanced wear and tear.

3 days after the op, I came home and rested. I was still taking the same medication as when I went into hospital, but the numbness I was feeling had gone. For reference, the medication was:
Codeine Phosphate - 30-60mg as needed
Omeprazole - 20mg
Pregabalin - 150mg x 2
Paracetamol - 1g x 4
Fluoxetine - 20mg
Diazepam - 2mg as needed
Oxycontin - 10mg x2

Since then, the pain has not decreased. In some ways, it has got worse. I am taking more medication now and feeling worse for it.

My pain seems to be generalised - all over my body. The main areas that I feel pain are - neck/shoulders/top of arms, wrists, lower back, thighs, ankles. I pay to have a weekly 90 minute deep tissue sports massage. Each week the same areas are extremely tight. The massage helps to maintain my current mobility but it is not improving things long term. The massage can sometimes relieve the tingling in my arms or legs, as it seems the muscles are pinching nerves as they are so tight.

The other symptoms that I have, which could possibly point to FMS are:

Chronic IBS in the form of constipation. I have had this since a child though even though I have tried all the usual things such as drinking more, higher fibre diet, colonic-irrigation.
Extreme sensitivity to light, smell and sound.
Stiffness from the moment I wake up, till the moment I go to sleep, I feel very stiff. This can get a lot worse after moderate activities.
Fatigue - I usually "crash" at about 3-4pm. I suddenly feel much more tired than my "normal" self and either have to sleep, or fight to stay awake. I have tried sugary drinks (tea etc) to try and top up sugar levels in case that is the cause, but this doesn't work. I also can't remember the last time I had a proper refreshing sleep. It is almost as if sleep just happens and I feel no benefit from it. I am always in a zombie like state. My head is always very foggy and I find it hard to concentrate on things. This makes my job (self employed IT consultant) very difficult as it requires periods of intense concentration. Luckily I work from home, so can usually time my work around when I feel OK.
Anxiety and Depression - obviously anyone in this state is going to feel down. I am also pretty much home all the time, and I feel very anxious when leaving the house.

These symptoms are every day, all day - along with the pain.

A lot of these symptoms could also be caused by my current medication. I am also concerned what other symptoms are being hidden by the medication as it is so strong. I am currently being investigated by the Gastroenterology department as my liver function tests are all over the place, and I have developed a fatty liver. I don't drink or smoke, so they aren't the cause. It could be the medication, or possibly a "Sphincter of Oddi dysfunction".

My current medication is:
Ranitidine - 150mg x 2
Pregabalin - 300mg x 2
MST - 20mg morning, 35mg evening
Paracetamol - 1mg when needed
Oramorph - 10mg/5ml when needed

Please - does anyone have any suggestions? Am I barking up the wrong tree with FMS? Is it just chronic pain?

The only symptom I can say that I don't seem to have is sensitivity to touch, but is this masked by the huge amount of medication that I am taking? I am seeing my GP tomorrow, but concerned she is just going to tell me to "keep taking the medication"... She keeps talking about how people have "phantom leg syndrome" and that I may still be thinking I have pain in my neck, even though the injury has been fixed. :(
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Re: Hi All - Desperate after years of chronic pain

Postby FluppyPuffy » Tue Mar 26, 2013 3:25 pm

:cow-wave: :cow-wave: and :welcome: to the forum :mrgreen: :mrgreen:

I'm sorry to hear what you've been going thru over the past few years. I'm not going to guess how old you are tho, as I'm rubbish at that game and never win the prize when we play it at parties :penguin: :penguin: :penguin:

I hope you'll appreciate that we can't say if what you are experiencing is due to FM or anything else, all we can really do is comment on what you tell us, if it bears any similarity to what we may have experienced and hopefully give you a suggestion or two about how you might be able to get things moving forwards towards a more definite name for what you have been going thru.

The only way to really see if your GP might be open to the possibility of FM being the cause of your problems is to bring it up during your appt. If you go with some info printed up from a reliable source such as this linky http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx as well as details of why you think your symptoms and problems could be due to it, and see what your GP has to say. Hopefully then it will start things off for you finally getting some answers :fingerscrossed: :fingerscrossed: :fingerscrossed:

There is lots of info and advice on here, maybe some of it will be helpful n helping you get a bit nearer to getting some of your questions answered. Anything else you want to know about, just ask and we'll see if we can help you with it :wave: :wave: :wave:


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Re: Hi All - Desperate after years of chronic pain

Postby gcwebbyuk » Tue Mar 26, 2013 4:25 pm

Hi FluppyPuffy - thanks for the reply :cow-wave:

Will see if anyone else can guess my age...

I appreciate that no one here can say if I have FM or not. I am trying to work out if I am on the right track or not.

The link you sent is where I noticed my symptoms mostly match and it started me thinking that it could be the reason for my torment.

I will do a bit more browsing of the forum to see if there is any more info that might help.

Many Thanks :)

Graham
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Re: Hi All - Desperate after years of chronic pain

Postby denys » Tue Mar 26, 2013 4:36 pm

Sorry Graham another that wont attempt to guess your age :lol: :welcome: to the forum all I would suggest is to bring the matter up with your doc and maybe get a referral to a rhuematologist for diagnosis :goodluck1:
Denys

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Re: Hi All - Desperate after years of chronic pain

Postby lolabolla » Tue Mar 26, 2013 9:12 pm

I'll have a go at.....................37

Lola xx
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Re: Hi All - Desperate after years of chronic pain

Postby gcwebbyuk » Wed Mar 27, 2013 12:04 am

Hi Lola - close 34, 35 in August, but feel 84 :(

I will let you know how I get on with the GP tomorrow...
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Re: Hi All - Desperate after years of chronic pain

Postby shazq » Wed Mar 27, 2013 8:29 pm

:cow-wave: :welcome: to the forum
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Re: Hi All - Desperate after years of chronic pain

Postby gcwebbyuk » Thu Mar 28, 2013 3:16 pm

I saw the GP yesterday, and we discussed FMS.

She has referred me to a local private (but takes on NHS patients) pain management clinic. Their waiting lists are really short too, so I should see a consultant within a couple of weeks.

She has also prescribed me Sertraline, which I have tried before. It knocked me for six (as did Amitriptyline when taken with my other medication). I will start taking it at the weekend, when I can rest and not have to attempt to work.

Hopefully things will improve....
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Re: Hi All - Desperate after years of chronic pain

Postby FluppyPuffy » Thu Mar 28, 2013 4:03 pm

You could try taking the sertraline at night, just before going to bed. It could mean that you sleep thru any potential side effects, esp if it makes you feel :sleep: :sleep: :sleep: :sleep: :sleep: :sleep:


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Re: Hi All - Desperate after years of chronic pain

Postby gcwebbyuk » Thu Mar 28, 2013 4:07 pm

That's what I tried last time, however it made me even more groggy the next morning than I already do with the Pregabalin and MST.

I will see how it goes, may take time to become used to.
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Re: Hi All - Desperate after years of chronic pain

Postby gcwebbyuk » Mon Apr 01, 2013 8:37 pm

Back again...

It was actually Cymbalta that I was prescribed (sertaline I had been prescribed a previous time too).

I took one tablet Friday night, and have been in a vegative state since. I went to the hospital yesterday to be checked over as I was completely out of it. They think I must be allergic to the drug, or for it to interact with my other drugs somehow.

I won't be trying them again...
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Re: Hi All - Desperate after years of chronic pain

Postby denys » Mon Apr 01, 2013 11:07 pm

Sorry they weren't successful, but there are plenty of others they can try so :fingerscrossed: for next time
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