AS and severe leg pain ?!?!

clink2002

Hi Im new to the forum, hopefully someone can help me.

In brief, im a 35y old male and 5 years ago i was diagnosed with ankylosing spodilitus. i had been in a car accident 5yrs before that and was badly hurt but the back pain that i suffered wouldnt ease so i had a scan done which showed up AS. I have been on 75mg of diclofenac for the past few years.

Up until 18 months i was keeping very active playing football, which involved training 3 nights per week and playing a match on a sunday. I was very fit and nobody involved in the football knew about my "issue". Since i stopped playing i have been trying to keep active BUT i am having serious problems with my legs. I have pains in both my thighs and calf muscles, and also in my right knee. I have been to see several physios and they are baffled because they cant understand that muscles strains should easd after time but these are getting worse. i have also been to my GP and have been put on a course of muscle relaxants (baclofen) but have been useless. Even she scratched her head the last time i was in. I have been told that it could be a muscle inflamation disorder.

The pain is hard to explain, i feel that i have to constantly clench my legs.

Im at the end of my tether and could really do with advice. PLEASE!!!!!

helpline_team

clink2002 wrote:

Hi Im new to the forum, hopefully someone can help me.

In brief, im a 35y old male and 5 years ago i was diagnosed with ankylosing spodilitus. i had been in a car accident 5yrs before that and was badly hurt but the back pain that i suffered wouldnt ease so i had a scan done which showed up AS. I have been on 75mg of diclofenac for the past few years.

Up until 18 months i was keeping very active playing football, which involved training 3 nights per week and playing a match on a sunday. I was very fit and nobody involved in the football knew about my "issue". Since i stopped playing i have been trying to keep active BUT i am having serious problems with my legs. I have pains in both my thighs and calf muscles, and also in my right knee. I have been to see several physios and they are baffled because they cant understand that muscles strains should easd after time but these are getting worse. i have also been to my GP and have been put on a course of muscle relaxants (baclofen) but have been useless. Even she scratched her head the last time i was in. I have been told that it could be a muscle inflamation disorder.

The pain is hard to explain, i feel that i have to constantly clench my legs.

Im at the end of my tether and could really do with advice. PLEASE!!!!!

Dear Clink2002

It sounds as if things have been very difficult for you lately and I hope that it is helpful that you have found our forum. AS usually causes low backache and stiffness and may be diagnosed as common back pain. You may feel pain in the buttocks and possibly down the back of your thighs and in the lower part of your back, however it is usual when you have a diagnosis of AS to be seen regularly by a rheumatologist who can look at the appropriate treatment for your AS and look at what these new symptoms could be. You can ask your GP to refer you to one. To read about the condition, symptoms and treatment follow the link http://www.arc.org.uk/arthinfo/patpubs/6001/6001.asp and
this will lead you to the booklet on AS from the Arthritis Research campaign. Also the National Ankylosing Spondylitis Society produces a guidebook that you can download on http://www.nass.co.uk/public/zips/NassBook.pdf that has information about symptoms and treatment. As well as reading through the information in these booklets you can also contact NASS (National Ankylosing Spondylitis Society). Their website is at www.nass.co.uk and they can be contacted on 0208 948 9117. I hope that this information is helpful.

Best Wishes
Dawn

clink2002

Thanks. i have been to see a rhuematologist and she referred me for an ultra-sound scan, which didnt show up anything and i was subsequently sent for an x-ray which also showed up as clear. Im frustrated that even though these showed up clear they dont want to find out what is the problem. I seen my GP 3 weeks ago and she gave me the baclofen tablets but they havent worked. Im really desperate for answers!! Im going to contact my GP again this week and ask her to refer me to someone who can give me answers. Do you think an MRI scan would show up anything that an ultra-sound didnt? Im worried that it might be a nerve problem or worse! Oh and there's the severe pain!!!

helpline_team

Hi
This time of getting symptoms, waiting to see doctors and getting a diagnosis can be one of the most worrying and frustrating times.
An MRI might show something that the Ultrasound didn't and its worth asking for.
Keep asking your GP to make referrals and keep asking questions until you get the answers. Plan each appointment carefully thinking about what you want to say and to ask so you make the most of the time you get with a doctor.
In the meantime, look after your general health, try to fit some relaxation as well as exercise into your day, and don't forget you can ring us if you want a chat.
Best wishes
Val

clink2002

I had an appointment with rheumatologist today, after demanding to see her with my GP. My hip, thigh and calf pain is extremely painful and is there every day.

I explained this to her today and all she could say was that there was nothing she could do and to try doing stretches?!?!?! I told her that i do stretch and if I do small amounts of exercise it is unbearable afterwards. She just shrugged her shoulders and said keep doing the stretches and she would see me again in 6 months. Ive been doing the bloody strecthes for over a year, and even 2 different physios told me there nothing they can do cos theres an underlying problem that they cant treat. I told her that amputation would be a relief and she said it couldnt be that bad.

I asked for an MRI but she said that it wasnt an option!

What am i supposed to do? Im really at my wits end!

skezier

Hi Clink,

Just butting in here and am amazed she was that bad..... I know sometimes you can catch them on a bad day but I wonder can you get to see a different rumo, either in the same hospital or in a different one?

Is the underlying problem the AS? I wonder if maybe the pain clinic would be helpful? My spine is fusing its self up and the stretching and exercises are very important but so is a bit of patient care and help with pain etc. If I were you I would go back to the gp and talk it through ands see what they think the next thing is.

An MRI might help but well sometimes they say they know whats wrong so you don't get sent for one. Here money is always in the driving seat as well so I don't know if you can ask for one as a 'right' but the helplines will be back soon and they will be able to help you. I just wanted to but in and leave you some support. I really hope things get easier for you. Cris x

dorcas

Hi clink,
I am soo sorry to read about what you have been going through...no wonder you feel as though you are at your wits end. :roll:

You cannot be expected to cope with unbearable pain and as the docs have already diagnosed AS then it's doubly hard to understand why you would be left so unsupported by rheummy.

As Cris said...ask to be referred elsewhere...that would seem the best option. meantime your doc can prescribe something more effective for the pain you are in...there are so many different meds and ones that specifically target nerve pain too that could be considered.

Keep your chin up clink....we are here for you until the helpline peeps are back behind the desks tomorrow...
maybe you should give them a call as it can help to talk through what's been happening and how you feel.
Iris x

speedalong

Hi Clink, I don't know about your condition as I have OA, however I do understand about severe pain.

Whilst you are waiting for appointments and perhaps a second oppinion from a different Rheummy. may I suggest you take a peak at a book which has really helped me

The Trigger Point Therapy Workbook: Your Self-Treatment for Pain Relief (Paperback)

It won't cure you but it may eleviate some of your symptoms. Also have you tried finding a good sports injury masseur - you need one with a knowledge of trigger points - not all of them have this knowledge or use it as part of their therapy. Both the sports massage and treating your trigger points will really help with the clenched, tight muscles - which really need help to relax - I know because I've been there too. There is no point doing stretches until the muscles are more relaxed and the trigger points are dealt with ...

Speedalong

PS I borrowed the book from a friend - found it so useful I didn't want to give it back - so I had to buy my own - got it from amazon.

polly1985

hey, sorry u r havin a bad time. im 25 and for 5 years i was passed from piller 2 post from them thinkin i had a blood clot to cancer no one could tell me what it was. i was then diagnosed with reduced space between disks in spine. i had very bad back pain, couldnt weight bear on left leg and extreme left leg pain.

i got treatment 4 the nerve being trapped but pain didnt stop, i saw more consultants and more gp's and got told it was all in my head. i had MRI's that told me everythin was normal, back an fore 2 physio classes that didnt help.

finally after changin gp's and seein a chiropractor i was told they were sure there was something wrong, so i was refered again 2 a neurosurgeon. he basically told me he would do an mri again but nothing would show up.

however this time it did, and it showed up arthritis. i have since been told that it can take a long time for something 2 show.

so do not loose heart somethin may apper and u can get the answer u need. it is a hard time without a proper diagnosis when u no somethin is wrong. xx

cheshirefay

Sorry you are having such a bad time with pain

Can I ask if the rheumatlogist is saying that you don`t have AS or is she saying that you do but there is nothing she can do?

Either way you are in a lot of pain and that is not acceptable when there are so many different meds and treatments they could try.

Maybe a pain clinic would be an option for you , they would try different things until they found something that helped you.

It must be difficult when you have been so fit with your footy etc, my son was semi proffesional until arthur hit at the grand old age of 24!! I know how gutted he is by not being able to play as I am sure you are.

Hope you get something sorted soon

Fay x

helpline_team

clink2002 wrote:

I had an appointment with rheumatologist today, after demanding to see her with my GP. My hip, thigh and calf pain is extremely painful and is there every day.

I explained this to her today and all she could say was that there was nothing she could do and to try doing stretches?!?!?! I told her that i do stretch and if I do small amounts of exercise it is unbearable afterwards. She just shrugged her shoulders and said keep doing the stretches and she would see me again in 6 months. Ive been doing the bloody stretches for over a year, and even 2 different physios told me there nothing they can do cos there's an underlying problem that they cant treat. I told her that amputation would be a relief and she said it couldnt be that bad.

I asked for an MRI but she said that it wasnt an option!

What am i supposed to do? Im really at my wits end!

Hi Clink

Your doctors really do sound like a frustrating lot to have to deal with. Her response when you told her amputation would be a relief shows she is not hearing the severity of it. When you are with the doctor are you physically showing the agony you are in or are you putting on a brave face when you are there? I'm just wondering if they are really seeing the distress you are feeling.

Did they say why an MRI is not an option? Is there someone who can come with you to fight your corner for you next time you go to see a doctor? I wonder if you have considered acupuncture or deep tissue massage if it is muscular pain.

On most scans it depends where they do it especially if it is some kind of nerve related thing, if they don't do the scan in the right place of course it won't show anything.

I hope you can keep your courage to demand some treatment for your pain as t is not fair to be in so much pain. Insist on a pain clinic referral if your doctor can't think of what to prescribe.

It may help to talk thing through so please feel free to give us a call.

Best wishes

Simona

clink2002

Thanks for all the advice everyone it really is appreciated.

I have made another appointment to see my GP in 2 weeks so i will explain to her my recent experiences and ask her to refer me for a 2nd opinion and hopefully an MRI.

I have also made an appointment with a specialist sports physio for this weekend (who i know personally) so hopefullly he can check me over and help in some way.

I also have another problem - Psaoriasis - that is seriously exacerbated by the ongoing stress, and my torso is virtuallly covered. I used to wear short sleeved shirts to work and now i have to wear long sleeved 1s.

If i could just get to the bottom of the pain or get some sort of relief I think it would help the psaoriasis.

Just hoping to get something sorted soon, and very soon!!!!

clink2002

Its been a while since i last posted.

Since my terrible last appointment with rheumy, and been to see my GP and have had an appointment with Orthotics as theyve noticed ive a fallen arch / flat right foot, and Ive been had a mould taken for insoles. The young girl i seen was very helpful and she explained where i woiuld be getting pain due to my feet, and i didnt tell her where i was sore and the areas she told me was where i have the most pain. So heres hoping!!!

i also have an appoitment this week with a pain specialist, which i have to do privately as the waiting list on NHS is c.6months. Im really hoping he can do something for me. Im desperate for relief. Every night i sit in my living room and eat ice cream as i break into sweats with the pain in my legs, ITS UNBEARABLE, im 36 going on 96!!!! Id considerable letting him give me cortezone injections in my hips and both legs and numb them.

Ive also received physio but no relief. Actually my physio couldnt believe i was in so much pain and not being listened to. He reckoned that i wasnt being taking serious because on first appearnaces i look physically very fit, im considering buying a walking stick for my future appointments.

i find it hard talking to people about it as i dont want to be seen to be a whinger. so typing this is a source of relief.

dreamdaisy

That's one of the best bits about the forums: keep in touch with us on LWA, we know about living with unrelenting pain, we know our stuff about painkillers and unruly docs who don't listen, sleepless nights and ghastly days etc etc etc. Not too many people look in on here, so if you would like more support post on the other forums. I wish you well and hope to see you posting there! DD (who hasn't been pain free since April 1997)

gickygawky

Hi Clink,

Sorry to hear you have had to find us but I am glad you did! The forum has helped me alot and I hope you find the same. I too suffer from AS and been diagnosed for about 4 years, although looking back I think I have had it for years.

If you would like, do feel free to drop me a line, I haven't come across many others like me (who have AS with all the crazy symptoms that go with it) but I am happy to share any knowledge I have with you.

I hope you are feeling well today.

Arna x