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I have HMS and it is getting worse by the day.

Posted , 4 users are following.

kairi73784
kairi73784

Every day is different and it seems that every day is worse than the last. I got diagnosed with HMS a couple of years ago and at the time it was in one shoulder. It is now affecting my whole body. The pain is so bad and the brain fog and fatigue is taking over my life. I work as a support worker for young adults with disabilities and absolutely love my job but I'm afraid after having my hours lowered and responsibilities shortened, the next step is loosing my job. I have so much sickness from work with everything that I am affected by. It is now getting to the point of questioning the inevitable. Do I leave or do I wait to be told I'm not fit to fulfil my roll as a support worker due to my own disability?? I am so undecided as to which path to go down as realistically I can financially afford to not be working but yet suffering for days on end after working 1 shift.

2 likes, 19 replies

19 Replies

  • hinny
    hinny kairi73784

    Posted

    I can only tell you what my rheumatologist, who diagnosed me, said to me, a little brutally, I thought, but she was right: it is a degenerative condition, it will not get better. You can make lots of little adjustments as you go along. I personally started with the shoulders, elbows, arms and fingers, when I worked as a translator. So I began to try and adjust my seating and desk and eventually had to stop working at that rhythm, which meant I couldn't afford to work like that and so I got a job at Specsavers. So my arms and hands were happy but my feet and knees started to suffer immensely, so they allowed me to do more sitting-down work. Then sitting there cramped me up but it was bearable but I couldn't stand the job anymore. So I started, with the fortunate help of a couple of authors, translating books: more time available, ok to use a laptop instead of desktop computer: I learnt to constantly shift my position, and take painkillers when I had to work for many hours. My walks with my dog have decreased from hours to less than a hour, and I will need to buy expensive and very supportive shoes. It brings on fatigue and depression which in turn causes fatigue and so on. A vicious circle. Then I started to think what the hell, and I am actively fighting the depression part, even with suitable medication, and I know now that all I have to do is adjust as I go along. If you find another job, one that allows you to sit down more as I'm sure your work is incredibly demanding, you'll see that your symptoms decrease. They may change, and then you adapt to those as well. It'll be ok, you'll see. But yes, if I were you, I'd start looking into other things you might like to do that put a less strain on your hypermobile body.
    • pam_87693
      pam_87693 hinny

      Posted

      Hinny you are so right I am a 68 year old still Hypermobile lady and your attitude of self preservation is quite right. However we all do need to inform our consultants, of all types, our GPs as only 10% know mine didn't and he is too! Also our dentists so carry on the good work and look after your body and inform 
    • kairi73784
      kairi73784 hinny

      Posted

      I feel like giving up all together sometimes hinny. I am finding it ever so hard putting a brave face on all of the time. I am completely at my witts end xxx
    • hinny
      hinny kairi73784

      Posted

      It won't always be as bad, I promise you. You do have to be aware of some factors. One, as Pam quite rightly says, is that very, very few of all the GPs and consultants you will see will know what is going on with you.

      Before my diagnosis, I had started running to lose the post-birth weight, and I felt like a nail had stuck in the front bottom of my foot. 2 years, treatment at the podiatrist digging, knifing around the area, and various theories later (they were convinced it was a verruca, then a corn, and I kept telling them that it felt like a bone was piercing me from the inside) I finally went to the rheumatologist for my arms and she said oh yes, this is a bone that has "dropped". She was the first one in two-three years of various aches and pains that were killing my spirit and frustrating me to finally tell me what the problem was.

      I am sure the physiotherapists' exercises would help. I even bought the gym ball smile! But I have to be honest, I got bored and was in too much pain after two days, I gave up. So I just take one day at a time. One symptom at a time. I decided not to feel too bad about the fact that I will probably never be able to take up running (unless I lose a lot of weight, which is difficult if you can't exercise vigorously), and I won't be able to take long ankle-threatening walks in the peak district with my dog (my passion).

      Some of your symptoms may just be caused by the accumulation of fatigue you are subjecting your body to. Is there someone understanding at your work, to whom you can talk to see if you can still work there, but drastically change the physical work you do? I am sure if you start deciding to look after your body's needs and attend to one thing at a time, the symptoms will decrease. For example, maybe they could train you as a counsellor? So you can still help out, but not physically.

      You want to have a baby? Go ahead and have one! I've had three and they are amazing, and the births were no big deal at all. My daughter I can already see she is hypermobile, but now that I know, I can help her ensure it doesn't escalate.

      Before giving up, start tackling one thing at a time.

      A last word of advice from the one GP that knew about this condition: whatever you do, you rest that part for the same amount of time that you've used it for. If you can't do that, then you need to change activity.

      Depression and feeling discouraged is all part of this. My saving was 1000's bottle of B12, daily. It has made an enormous difference. At the very least it won't hurt you, so try it smile

    • pam_87693
      pam_87693 hinny

      Posted

      Hinny great advice but don't let the orthopaedic surgeons anywhere near you! They chopped off my knees and thumbs without asking if I was double jointed, it was only when my son a doctor looked at the X-Rays taken before but after the deeds were done, he said mum no NHS doctor would have done that! There was nothing wrong with your knees!!! That's private healthcare for you! 10 years ago! And we go septic vert easily!!!
    • kairi73784
      kairi73784 hinny

      Posted

      Thanks hinny x

      What is b 12. I have started to do a body map with a key to take to the specialist so I can make sure I don't miss anything. Xxx

    • kairi73784
      kairi73784 pam_87693

      Posted

      Wow pam that is awful I'm so sorry to hear that xxx your knees how does that work then xx poor you xxx I will be sure to keep my defence up in that area thanks for sharing that with me xxx
    • hinny
      hinny pam_87693

      Posted

      Jesus that is just awful! No wonder you are so well informed now, that is just terrible sad
    • hinny
      hinny kairi73784

      Posted

      It is a vitamin which apparently not everybody retains properly. https://patient.info/health/vitamin-b12-deficiency-and-pernicious-anaemia

      I get mine at holland & Barrett just because it's in every town and is often on 2 for 1 offer. I take the 1000ug (whatever ug stands for smile concentration, the highest, and so do other people who use it for strong symptoms of depression and fatigue. Like I said, the good thing is that if (among other things) you do not have B12 deficiency it won't harm you. But to really start feeling an effect you need to take it religiously, every day, and for at least one month. After that you'll notice that when you start feeling a little low and with bad thoughts you might find you'd forgotten to take it smile

      I'm sure you'd be ok to ask the specialist as well, I do hope this one makes you feel less uncared for x

  • pam_87693
    pam_87693 kairi73784

    Posted

    Hi I think what Hinny said is true. Sadly for many of us bendy folk, we weren't considered to be anything but benign (medical speak for nothing to worry about) this was caused by a historic oversight. You can't expect the professionals for not understanding something they weren't taught about. Being Hypermobile is normal but when it turns into Hypermobility syndrome then it isn't. Being Hypermobile is part of Ehlers-Danlos group of connective tissue slight disorders. Some are worrying others won't how long you live, that is why EDSIII now called HT wasn't thought to be of concern. I am sure you know all this already. However because you were born with a slight imperfection of your connective tissue if you have to do a great deal of heavy lifting of strenuous work it will both tire you, and possibly cause chronic fatigue syndrome. I would suggest you ask your GP to refer you to a physo for advice on how to protect your joints and to advise you on whether to mention your problems to your employer. May I ask do you have dry eyes or mouth, if you do you may have another problem so a sky your GP about that too. You probably may have dental problems, if so please tell your dentist you are Hypermobile as he should be helpful as to why and what could should be aware of. The EDS group have a brilliant book which gives you load of information on every aspect of this inherited problem. 
    • kairi73784
      kairi73784 pam_87693

      Posted

      I have dry eyes and mouth all the time and am constantly having trouble with my teeth. I am having sedation next week to have a broken tooth out as I had root canal on it a couple of years ago and the anathetic didn't work so felt all/most of the pain. To be honest it has scared me a bit and am now terrified of going to the dentist. I am 26 and having so many problems already. It is daunting to know that I am never going to get better and am going to struggle for the rest of my life. I have an appointment coming up to see a new specialist as my other one discharged me and basically said just live with it which I found highly frustrating concidering at the time I didn't know what the hell was going on. I am just scared they are going to fob me off again. I get so dizzy all of the time too. Scraped my car on my drive way post today because I had a dizzy episode and fear that I may have blacked out slightly. I literally have pain from head to toe every day now and more days are more intense that others and having much more bad days than good. I am not the smallest person but am finding it so so hard to loose weight.
    • pam_87693
      pam_87693 kairi73784

      Posted

      Sweetheart I do understand as I had all those problems too, at the same age however I am 68 and have somehow coped with 4 sons too! It is tough but I am certain your rheumatologist will help you. Your problems are EDSHT related but if you want a baby ever please explain to your GP that you have EDS so you can get special care. You must explain the EDS complications to your dentist as the reason you are having so many tooth problems is your tooth enamel is thinner than normal folk, you may have twisted roots and possible tooth overcrowding. The sicca symptoms the dryness are similar to an autoimmune disease called Sjogren's Syndrome. If you don't have the markers for Sjogren's your GP will be able to tell you, then you still have the sicca symptoms and these do need to be addressed. There are several treatments available to stop the dryness so please do tell your rheumatologist as she will advise you what to take, drops, sprays etc. 
    • kairi73784
      kairi73784 pam_87693

      Posted

      Thanks pam. I hope the new rheumatologist a dresses all of the new symptoms that I have because it literally is a huge effort every day to even get dressed and get out of the house. I keep being told to give up work but it isn't that simple is it. I want to have children more than anything but am so scared of things going wrong. I had a late on miscarriage when I was 17 and didn't have a diagnosis then. My partner can't even touch me sometimes and even my chihuahua standing on my is painful to the touch xxx
    • pam_87693
      pam_87693 kairi73784

      Posted

      Kairi I do understand your fear of the dentist but believe me you need to look after your teeth. If you have dryness your teeth aren't well protected as saliva is a antiseptic. As your Hypermobile your tooth enamel is thinner than normal and your roots may be twisted. If that isn't enough your gum tissue is more fragile so use a very soft brush. Your dentist should prescribe a special toothpaste and ask your rheumatologist about glandular stimulating drugs. Ask him if he has done a blood test called ANA this may help him to treat your dryness.
  • pam_87693
    pam_87693 kairi73784

    Posted

    OK then your dizziness and oral and mouth problems are all caused by being Hypermobile. But the problems get worse so your classified as Hypermobility syndrome. This means your body is out of balance because you and your daughter are both Hypermobile. However the dizziness could be POTS! this stands for Postural orthostatic taychardia syndrome. This may be because when you stand up you feel dizzy. This is because your whole body is made of slightly imperfect connective tissue. Now this old lady now 68 was born Hypermobile I then had PCOS from my mum. She had Psoriasis, my dad had flat feet and was very anxious and bad tempered. I put this down at the time because he had witnessed some terrible things in WWII. The PCOS cause fertility problems and my firstborn son died at 11 weeks post preeclampsia. Coot death. My POTS started when my last son was born as I had very severe morning sickness for 39 weeks and lost 6.5 stones! That was when I really started to feel faint! I think that was POTS however I have just been up to a London hospital and they are going to put me through 3 days of autonomic testing as they think I have dysautomnia not POTS! I don't know what the difference yet but I will tell you if and when I find out! However Hypermobility is a dominant genetic defect so any of your children may be. Mine are Beighton 3, 9 like me, 3 but being boys they won't suffer as much as they don't have the female hormones to relax joints! 
    • kairi73784
      kairi73784 pam_87693

      Posted

      Wow that is complicated stuff isn't it. I will be sure to keep trying and fighting every day and I will definitely be having a chat with my dentist xxxx thanks so much pam xxx
    • pam_87693
      pam_87693 kairi73784

      Posted

      Wonderful darling he does need to understand. If you go onto the net there is a wonderful site for people with Hypermobility syndrome when you see the site they will give you links to take to your GP, Dentist etc. if you have a printer or know someone who has print them off as it will help the healthcare professionals as well as you. Good luck 🍀
    • kairi73784
      kairi73784 pam_87693

      Posted

      Do you suffer from insomnia pam. I can't sleep at all at the moment for about 9 months I would say now xxx
    • pam_87693
      pam_87693 kairi73784

      Posted

      Oh yes insomnia is terrible of course nobody knew about being Hypermobile when I was a child but I was told by a cousin I used to sleep walk! As a child I tossed so much I threw the covers off my bed. I didn't realise why, or why I could hear noises in the night when everyone was asleep. I get very vivid dreams too 
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