Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Extremely stiff muscles

Hi guys,

Lately I've been feeling quite good with my AS despite the odd pain in my back and neck after long periods at the computer. I've been seeing an osteopath which seems to be helping. The problem I have noticed is not with my bones joints etc. but with my muscles. My hamstrings and calves in particular have become very painful and stiff. The muscles feel as though they are all blinded together and they are rock hard and I am in pain lifting my leg to take a step up a stair. I use a sock aid to help me and I've even been struggling using this particularly in my right leg.

I mentioned it to my rheumatologist who said they would check the enzymes in my blood, but in was wondering if there was someone else I could see like another specialist. They have also referred me to physiotherapy but in England the physics at the NHS aren't very hands on and try to get you to do things yourself, but I feel my muscles are so stiff there I need someone to physically stretch and massage my muscles. I have a high pain threshold and could take the pain to see improvements, but I physically can't do the stretches myself.

Any advice guys?

I'm having the same problems here.My feet feel stiff and toes hurt a little and are stiff.My calf and ham strings feel stiff also.

I am going to also keep an eye on this post to see what people have to say

Familiar problem.

Of course the thing that has helped the very most is getting the inflammation under control, with Humira.

But before that, things that did seem to help:

heat

PT or chiro ("soft tissue work", gentler than massage which only made my muscles ball up worse, when very tight "counterstrain" works very well)

zanaflex

ultrasound

gentle walking

magnesium

the rheumy put me on coQ as well for my muscles.


The reason for the tight muscles is the enthesitis. The tendons attach the muscles to the bones, those attachment points are inflamed, and so the muscles "spasm" to try to stabilize the area. Or so the way it was explained to me by my doctors.

Agree with Sue about getting the inflammation under control. I was in the same position as you with rock hard muscles, and also some pretty bad muscle spasms in my spine, and that was what mucked up my investigations for ages, because my foreign GP didn't understand my english well enough to ask a lot about the family history of autoimmunes and inflammatory arthritis so assumed it was something neurological. Of course neurologists found zilch, which meant that their fall-back position was that "it must be psychological". But, the good news was that once I started on antiinflammatory treatment (just NSAIDs at full dose, regularly at that time), that extreme muscle tightness really lifted.

I think if you have had the blood tests done to rule out anything else, then just assume its inflammation-related in some way and concentrate on getting that under control. If you aren't already doing them, a full range of stretches every day is a must, and something that its almost easier to do on your own than try to get physio help with - and you are so right about UK physios not being "hands-on". Download the stretches from the www.nass.co.uk website, and while you are at it, consider joining NASS as well - they can be a really great resource for UK folk, and have an excellent magazine as well as a phone help line. The stretches come in the form of an app as well if that suits you. I can't do all of them, but I do try and make sure that every joint is stretched to its full (comfortable) range of motion every day, and it really does help.

So I take Ennbrel or entracept not sure if one is just a brand name this is an anti tnf injection, is this also an anti inflammatory? I was taking pain killers and anti inflammatory tablets regularly but when I started taking the injections I stopped taking my tablets as I thought the injections was to replace then although I have never had this confirmed I just done it on my own accord. So I'm not sure now wether I should also be taking
sulphazalizine also.

The counterstrain were would I be able to get this treatment? I'm currently seeing an osteopath an he does electro therapy, blood cups an massage on me not entirely sure if it is working. It is very relaxing but not sure about the be edits of this treatment, I've been thinking about trying to see a chiropractor instead.

What is zanaflex and coQ? Also how so you take magnesium?

How would an ultra sound be beneficial also I thought this was just a scan?

Sorry for all the questions I just want to sort myself out and am willing to try anything

What do you mean about your gp thought it was something neurological? Had you not been diagnosed with AS at that point? Just asking as I want to check my muscle stiffness is nothing to do with something neurological.

The physios in the UK annoy me. I was seing one in my hospital in the hydrotherapy pool and the time I was there she was just watching me do my exercises and swimming herself (when I say swimming mean just floating about and as far as I'm
Concerned skiving really) there was one physio I seen a long time ago who I really like I seen him privately and everytime I went to see him he took measurement of how far I could stretch and this really helped me as like after a few weeks I was seeing results. I find with the NHS physios I tell them what I think could help and they change the subject and don't listen to you which makes you want to bang your head against the wall and give up.

I am convinced that if I can get some flexibility in my legs my AS will improve. I cannot put my socks on and I don't think it is because if my AS but instead how tight my hamstrings are. I really wish doctors etc would listen to me you know some ate really dismissive. I have found that people with the condition know far more than the doctors. I mentioned to my doctor one about a NSD and he told me there was no evidence to say it works, and I asked him has there ever been any research done to back up that it doesn't work and he was like huh? They really annoy me at times just because its not in there books they have learnt doesn't mean it doesn't work. This is a bit different but years ago I used to smoke cannabis and I was in no pain whatsoever I honestly believe that it is the best pain relief I have had but they will not research the benefits for people with arthritis etc as there is a big thing about how bad it is. And yet the government allow cigarettes and alcohol to be sold which we know are killing people but a blind eye is turnt as the government are making huge profits from this. It also annoys me that healthy food and things that are good for you are really expensive and all the crap like fast food is cheaper. I find it so hard to get things like low carb products like bread and no added sugar chocolate. In the UK and the US there are lots of people with weight and health problems and it is so hard to afford and find healthy foods, but if you want junk there is a McDonald's within 5 minutes of most homes were u can get a cheeseburger for 99p. Sorry about the rant i just go into one sometimes and don't have anyone to tell what I think.

I was trying to import healthy products myself to sell but it is so difficult to find a wholesaler. I get really I inspirational at times and think about like writing to the prime minister to express my opinion on this haha

If there are any typos or something doesn't make sense it is the predictive text on my iPhone I typed physios and it changed it to psychics

I am following this post pretty close.I was wondering if As can affect the feet.Lately my toes and tops of feet feel kinda sore and stiff...not terribly,but it is concerning.

Quick answer is yes AS can affect feet. Joints, sausage toes, cramping arches, tendinitis, etc. Methotrexate and humira help but I still have to wear comfy shoes and orthotics almost all the time.

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So I take Ennbrel or entracept not sure if one is just a brand name this is an anti tnf injection, is this also an anti inflammatory? I was taking pain killers and anti inflammatory tablets regularly but when I started taking the injections I stopped taking my tablets as I thought the injections was to replace then although I have never had this confirmed I just done it on my own accord. So I'm not sure now wether I should also be taking
sulphazalizine also.


[/quote]

Enbrel is the name the drug is commercialised under, and etanercept is the active substance that's in it. So they both basically refer to the same stuff.
Enbrel is an Anti-TNF alpha, not an anti-inflammatory. If the Enbrel works well enough, you won't need anything else. However if it's not enough your doctor can prescribe other drugs as well. For 4 years I was on a trio of Enbrel + methotrexate + anti-inflammatory (mobic). To my knowledge sulfasalazine and anti-TNF wouldn't be prescribed together.
I'm now just over a month on zero drugs (not even aspirin) and hopeful it can stay this way.
All the best to you !!

I did not know enbrel was not an anti inflammatory maybe I need to be asked to be prescribed one as well then. I was taking lots of different medication for years and now I only take the enbrel which see,s to be working for my bones and back but not fray mussels at all.