Question
Hi. my problem start with back injury sum 2 years ago but then sum 18 months ago while on various drugs (perscribtion)I had a pain in the rightleg this did not go away not only got worse but seem to spread to both legs to toes also both arms again right down to my finger tips (periheral neuropathy)
All bloods test were normal except for my CK level which when test was about 1250 this went to normal  the next time I was tested Venlaflaxine was possible cause but there where many other drugs been taken at that time. No spinal fluid test has been done!or nerve biopsy taken  

Dr Jacoby Rheumatologist Jan 2004.recomend EMG

Tests Feb 2004  EMG via Dr Ragi Neurophysiologist.

Dr Jacoby Rheumatologist Feb 2004 myositis which is moderate& non active, but points to generalised axonal peripheral neuropathy which is mild & unlikely to be directly related to the pain.Since I have seen

Dr Gutowski neurology Oct 2004 confirming peripheral neuropathy, I have appointment next week with Dr MacIntyre pain clinic 9 Feb 2005 Lignocaine infussion.I have included below data which may throw some light on the problem! I am now taking docusate sodium 100mg twice /day (constipation),the side effects of morphine are not a joke as with all other prescribed medications,all these I feel have only made matters far worse.I have stopped taking the morphine today & awaiting return phone call my doc's re this constipation as I have not been for a week.

I have not listed all drugs that I have take over past 2 years as I would possible run out of paper.

Is this condition not only disableing but degenative but incurable?
I have found that it appears to be now in my body & my sensory & motor feelings/effects have increased & I am only getting worse.
thanks for listening

Ken         

What I feel like on average day / night (started 30/11/02 back injury)

NEUROAPTHY start mid 03

In morning or after being asleep feel that I have had heavy weight on me (squashed). This is on chest / arms / hands / fingers / shoulders / legs. This takes ?hour to 2 hours to subside, hands hot and swollen. Whether I am asleep at night or in the day, on waking, legs are raised or not.  I cannot move with excruciating pain in arms / legs right through to tip's of toes / fingers, takes ?to 2 hours to move, if someone is there to help and move the limb's by shaking vigorously until I can start to fight back taking control of limb's, otherwise it takes longer. There is more pain in fingers/hands/arm's/shoulders than in the leg's, the pain will slowly reduce. Then lack of feeling more noticeable in hands / fingers,  it's like numbness/needles & or aching / stabbing / shooting pains or even like being electrocuted or pin's & needles, It is forever changing. Great difficulty in walking, stairs are just awful over this last month or so the stabbing pains have also moved into my body, it would appear to be spreading.

Can't open screw top's or various seal's or pick up ?full kettle of water or hold newspaper without pain increasing, constantly dropping things. Driving only locally to the shop's, etc., shopping awful, When walking pain increase's as with any activity, cleaning by others as with washing/dishes, the day to day existing is becoming increasly difficult, etc., gardening DIY totally out of question. But can do own personal hygiene which takes time effort & pain.

It would appear to me that what every drug that I've had, it has only made my neuropathy considerable worse & with there side effects just an added bonus, which one did not need. Is there any treatment that can reverse or slow this progressive and debilitating condition

SLEEP FOR 3-4 HOURS at night if that.

BACK

In constant Pain in lower part no difference still with sciatica in right leg (gives way) worse when more active, pain increase's

Overall

I feel less than 10% of the man I was 2 years ago.

Rehab

Activity only increases pain

TREATMENT

Dr Chan April 2003. Orthopaedic. Physio-pulse programme(REHAB) Oct 2003 ONLY

Toxic drug reaction August 2003. Venlaflaxine CK . 1250 pain started in upper right thigh. changed drugs. Pain level 10  

Dr Chan Sept 2003.  Orthopaedic.       THEY Can't do anything!

Dr Jacoby Rheumatologist Oct 2003. Tried hydrocortisone (WRIST LEFT HAND) no better. Just more pain in that arm. (carpul tunnel)-- psoriatic arthritis, RAYNARD'S.

Dr Crundwell Urologist Jan 2004.Prostrate

Dr Jacoby Rheumatologist Jan 2004.recomend EMG

Tests Feb 2004  EMG via Dr Ragi Neurophysiologist.

Dr Jacoby Rheumatologist Feb 2004 myositis which is moderate& non active, but points to generalised axonal peripheral neuropathy which is mild & unlikely to be directly related to the pain.          Yet again can do no more!

Dr Crundwell Urologist Feb 2004 tests.

Dr Crundwell Urologist  March 2004 TURPS OPERATION.

Dr MacIntyre Pain Clinic July 2004

Dr Jacoby Sept 2004 letter to neurologist re tests (muscle biopsy, / investigation) has not been done to date

Dr Gutowski neurology Oct 2004 confirm peripheral neuropathy

Dr MacIntyre pain clinic  9 Feb 2005 Lignocaine infussion

Awaiting appointments for treatment pain clinic / Neurology /Pulse.  

Answer
Ken,

It certainly does sound like you have a terrible amount of pain. It was very difficult for me to decipher some of what you were saying, but from what I could gather, your questions to me are asking if there is a treatment to stop the progression of your problems. I am by no means a physician; my expertise in pain comes from the pain I have experienced and from talking to others with similar chronic pain. This means I can't tell you if there is a treatment because I don't know what you have. Also, I can't tell you if it's degenerative or incurable for the same reasons. But, what I can do is give some advice that I've seen good results with in other chronic pain sufferers.

For immediate relief, try heat. Dry heat or wet heat, doesn't matter. I reccommend a rice bag, but if you can't stand the weight against your skin, a heating pad will do. Some people are also helped by cold. Usually I find more people like the heat than the cold, but you could try either, if you haven't tried them already.

Also, it sounds like you're receiving a heavy regiment of pain treatment; you mentioned a pain clinic, and that's usually something I mention for pain sufferers who are not able to find help elsewhere, so it may be a good move for you. Keep in mind though that very large dosages of strong painkillers like morphine and lignocaine will eventually cause your body to become immune to other pain killers and make it hard to get any pain relief at all. I know that often there are no other options; I've been there. But I'd suggest asking for the lowest dosage or infusion possible that will adequate handle your pain.

Another thing that's important on your quest for answers; when you go to these different specialists (which is a good idea, I think, because it provides a variety of different opinions in different areas), make sure you have a thorough list compiled of all the medications you've tried, all the tests you've undertaken. They need to know this information. If you can't remember exactly, just do your best.

If all else fails or if you want to look at an alternative to traditional or modern medicine, I would highly reccommend natural or homeopathic medicine. Many people are a little leary of it, but natural medicine is a very good way to heal your body the way nature would have it-by natural, non-chemical means. It's not for everyone; you have to trust in the ability for natural techniques like accupuncture and herbal remedies to help you, just like you do for traditional medicine like you find in hospitals. But I always mention natural medicine because it was the major force in healing me of my pain.

By far the most important advice I can offer would be to never give up. I know it's very hard not to get discouraged or feel hopeless because doctor after doctor says there's nothing he can do. But there IS an answer out there. Many people's answers are different, but there is one out there for you and if you look hard enough, keep persevering, and most importantly, tell yourself that you want to be pain-free and you won't stop searching for an answer to your illness, you'll find it. Like I've said, not everyone is healed the same way, because every body, every chemical makeup, every pain is different. But you can do it. Don't just blindly rely on the doctors and take everything they say at face value. Investigate it yourself. I know you're having a difficult time moving, than everything you do causes you pain. Use the internet to look for answers; also ask friends and family to keep their eyes open and their feelers out for helpful information.

Just don't give up. Easier said than done, I know, but it's worth it in the end, when you know that you're not going to let that pain beat you, that you're stronger than it.

Remember, Make sure you give your doctors the third degree; ask every question that floats through your mind, and don't leave unsatisfied with a lack of reply from them.

I wish you the best of luck and blessings in your search and in the future. If you have another question, feel free to answer and I'll do my best to answer it. God bless!

Sincerely,

Celeste