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Does PPMS attack your joints as well as muscles?

Hi All,

Hope this finds you all as well as you can be?

I have lots of the usual problems. I have heavy legs that don’t work too well at times, for instance.

However, over the last few months, it seems that my joints, not the muscles, are getting weaker. For days at a time both my wrists become very weak, making it almost impossible to pick anything up. I have noticed also that my ankles are much weaker than they were. I have problems at times coming down the stairs, my ankles give way.

Also, over the past months I have had a pain on my right side, over the ribs. I have seen the doctor and she says I have intercostal neuralgia. This has now moved to include my back. Right up to my neck. I cannot sleep because each time I turn over in bed, the pain wakes me up. Sometimes just breathing in is extremely painful. Sound like MS Hug to you guys? My doctor dismissed that but I am not so sure.

I would like to hear from anyone who has had similar problems, especially with the joints as I don’t seem to be able to find anything about joint pain and MS.

How long has the Hug gone on for other people? I have had it for a couple of months now and it is so frustrating, I am sure you understand if you have had it.

Take care all and hope to hear soon.

Love

Anne

x

Hi Anne, yes it can affect the joints too. Basically it can affect anything as the whole body is governed by the central nervous system, and that’s where the damage caused by MS is. I get terrible problems with my wrists. They can be fine for months on end and then suddenly very painful… can’t even wiggle my fingers. I used to get this years before I was dx and thought it was arthritis… but now convinced it’s MS. Weakness in joints is also common with MS… although as with all symptoms, not everyone gets it. The feeling you describe over ribs and back… YES that sounds just like hug to me. I often get it on one side (usually left side for me) but other times I get it low on ribs on both sides. Very painful. Try taking one paracetamol and one ibuprofin… I call it the ‘magic combo’ and it’s the the combo that doctors and nurses use when they are in pain. No more than three times a day. I find that works very well on hug. Also are you on Amitriptyline or Gabapentin? Both of those work well on hug. If you wear a bra, the best thing you can do is stop wearing it! Bra’s irritate the small muscles between the ribs, and basically hug is those muscles going into spasm. As with everything MS, avoid stress, over-doing it and heat… all will lead to fatigue and make hug worse. Yours has gone on for a long time… mine usually last a few hours to a few days… sometimes it will even come and go again in minutes. I suggest you contact neuro or MS nurse and tell them you have hug and how long it has gone on for. That is really a long time and I really understand how painful and uncomfortable it is… hard to even sit still. Take care Anne… hope you get some relief soon, Pat xx

HinAnne

Yes I also get very painful wrists and ankles sometimes, als8 they appear weak. Like PatnI used to think it was probably arthritis, but ms seems to effect loads.

I normally place a hot water bottle in my back for the hug, but be careful if you are the same as me not being able to tell if it is too hot.

Good idea to mention to your ms nurse or neuro if you can, take care.

Pam x

Hi Anne. I feel it in my hands and fingers too, like an arthritic old lady sometimes, but worst of all is my hips and knees. I wonder sometimes if this is caused by my gait having changed with my balance issues, or my hands having to grip things harder as my co-ordination is impaired. It’s very unpleasant but there are meds that can help. It’s not all in your head, or most of us are hypochondriacs too. It’s a funny illness and they’re actually doing research at the moment on pain in ms, I know this because I’m a guinea pig. Until recently they didn’t accept that ms could be painful.

Take care and I hope you feel better soon. A warm bath might help you relax and ease your hug if you can manage it. It works for me when I’m strong enough to get out.

Cath xx

Hi Anne I have the same problems as you, my MS nurse has changed my meds, I know take Pregabalin 100g three times a day, and Clonazapam 2x10mg nightly, it helps me get a descent nights sleep at leased. Only trouble is my legs give way, so haven’t quite sorted that one out yet. Hope that helps, and good luck. Deborah

After reading these posts I was wondering if that could be why I have been suffering with stiff neck and shoulders over the last two months some times it feels like I can’t hold my head up properly Any comments Steve

Hi Steve

I wonder if you get the same as me, pain in shouldersa and along the clavicle bone, and also it feels like my head is too heavy for my neck to hold up. I know this sounds silly, but it is the only way I can describe it.

I sometimes where a neck collar that the ot got me, but the ms nurse told me not to wear it as it will weaken the muscles more, so you are left in between a rock and a hard place, nit knowing what to do for the best.

Sorry I cant offer you any info to make it easier, but thought it may help to know you are not alone with this one.

Pam x

Hi gang, having to practice what I preach at moment…taking the 1 paracetamol and 1 ibuprofin 3 times a day. I’m in absolute agony with my left hip. Yesterday morning I could not move as even small movement was unbearable. The only pain I’ve experienced as bad as this is childbirth. Thankfully the drug combo really is magic. Lying on bed with pillow under me knees and drugged up to the eyeballs! Also taking Amitriptyline. Luckily I have my annual neuro appointment on Wednesday. Sorry I’m quiet on the board at mo. I know you will understand. But in terms of this thread…oh yes MS can cause all kinds of pain! Love to all, Pat xx

Hi Pat

I am sorry to hear that your elf is playing up again, I empathise with you as constant pain is horrible, and I dont know how they affect you, but more medication makes me zombified.

I do hope you feel better soon, good job you have an appointment on Wednesday, sending you some (hugs)))

Pam x

Thanks for the info I sometimes think I am the only one with these symptoms and don’t like saying any thing in case people think I am a ipocondricate You probably know what I mean Steve

1 Like

hi peeps

i have rrms 2 yrs now but think iv had ms for alot longer, prob brought on by the shock of looseing my son 11yrs ago. some of the ppms symptoms pain in my hip started 3days ago real sharp stabbin pain, feel like iv gone 3 rounds with mike tyson on my chest. when i lay in bed readin at night but to try and get up is sooo painful, im on amitriptyline and pregabaline 150mg 3 tabs mornin n eve had nueropro patch increased coz cant keep my legs still at nite, an i becomeing pp or an i just havin a bad week anyone no ?

.

paula x

ps i was on rebif injections and i ended up in hospital with status migrainus headaches pain level of the scale and then tryed copaxone and again had 2 call an ambulence again another wk in hospital. my nuerologest has now decided to leave me without injections to recover, is this intolerence to injections anything to do with going into ppms?

any ideres?

paula x

Hi Paula and welcome. RRMS cannot turn into PPMS. It can turn into SPMS (Secondary Progressive). PPMS starts as progressive so it never has relapses or remissions. Have you had relapses and remissions since first getting symptoms? If so it was RRMS and might have become SPMS. IF not, and just steady progression from the outset, then it might be PPMS and was wrongly diagnosed and RRMS. Only your neuro can really tell you these things. I don’t think that people with PPMS have intolerence to the RRMS drugs… they just don’t work. Lots of people think that PPMS is the worst type of MS but that’s not necessarily so… agressive RRMS can be worse and more disabling. It is different for everyone. For the hip pain (which I’m in agony with right now) try 1 paracetamol plus 1 ibuprofin, no more than 3 times a day. I hope you get some answers soon, in meantime rest as much as you can. Ask the neuro about Restless Legs Syndrome. There are drugs that can help. It’s a condition that people without MS or with MS can get. Take care, Pat xx

hi pat

yes i had a relapes 2nd dec was put on steriods and 3 wks later within 15mins went from ok to confused coulnt move legs and arms very heavy couldnt breath and falling into a sleep thing but could hear what was being said, ms help line said to my partner …call an ambulance, hospital stablelised me and 6 hrs later sent me home, that was a sunday… same thing happened on the thurs after but was joind b violent shocks every few seconds down my legs… again i was admitted to hospital this time i was in for a wk, had 2000mls of steriods on iv put into me, and had more attacks durin the wk, was horrible. when i got home my partner looked at side effects of copaxone and it was all there iv had a cough for 3 months bin on antib 2 lots but still with me, chest xray was clear… y cant i deal with injections? iv had restless legs all my life but i have leisons on my spine and now i cant keep them still… was on rapinerole but hospital gave me Neupro patches 4mg. im hoping to get back to work on 20th march…bin of since relapes 2nd dec

paula x

I just keep taking the pain killers if it dont hurt it must have dropped off. I must admitt when I wake in the mornings my joints hurt but later in the day not so bad

Hoppity Your symptoms sound like mine I also start to ache when I have done to much our later in the day when I start to get tired . Which is every day afternoon sleep is a must for me I feel I am sleeping my life away but if I don’t I suffer the next day Steve

Please don’t think you have to live with pain. I hated taking any meds but I’ve now relented and take enough to kill a donkey but I’m comfortable and thus have a decent quality of life. I too suffer severe nerve pain in legs and hips, the heavy head and arms too but it can be controlled. If you don’t seek treatment early your body becomes highly sensitized and after a while it perceives every sensation as painful.

This happened to me because I left it, telling myself I had a good pain threshold (which I do) but played the typical Brit and tried not to take anything. I’ve now got permanent hyper sensitivity which means I’ll have to continue taking maximum doses of nerve pain meds and morphine for the rest of my life. It’s not clever or heroic, I’ve learnt it the hard way. Please don’t do that to yourselves, I still wish I could turn the clock back.

Cath xx

Hi everyone: I have PPMS diagnosed October 2017. Lately, I’ve noticed painful jointes, weak lega, stiff neck and pain, stiff back and pain, and I always thought that MS attacks the joints…what about muscles in the neck and back?

Hi there,

I spotted your post but most people won’t notice it, as you’ve added id to a very old thread from 2014.

Please start a new thread so people see it and welcome you to the PPMS crew smiley

I don’t know anything about MS attacking joints but it definitely causes muscular issues. I suspect Baclofen is the most commonly taken medication by MS patients. I take it for the ‘spasticity’ in my leg muscles, basically it reduces muscle tone in muscles, so they’re not switched on when they should be relaxed.

I get horrible burning in my shoulder muscles when I’m not even doing much, I just thought they were very tense before I knew I had MS!

Anyway, welcome but start a new thread so people will see it.

Sonia x