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Frozen shoulder - night of agony

Posted , 3 users are following.

Mincub
Mincub

ive been diagnosed with FS last December ..although pain 'started' in September and I didn't take a lot of notice having had major surgery that side (right) thoracotomy to remove a schwannoma from my mediastinum (chest Cavity) operation left me with brachial nerve damage lymphodema and vocal paralysis that side.

I also have recurring bouts of temporal arteritis (same side) and last night the pain was so bad and had travelled into the right side of my neck, my ear and face and eye. To be honest without sounding melodramatic I thought 'this is it' I'm on butrans and temgesic and eventually after 4 hours of hell ..it went back to its awful but not agony state.

after finding this site today I realise that the FS has shifted into my neck and I'm really just posting for any, any kind of advice as tonight approaches and once again I can feel the pain upping the odds. To be honest it's a battle I don't want and I'm not sure I can win.sorry to be a moaning mincub.

0 likes, 17 replies

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  • claire50742
    claire50742 Mincub

    Posted

    Firstly you are not a moaning mincub! It sounds as if you are in so much pain.... Having been there and wondered what on earth is happening to me, I feel for you as will many on this site. The pain is quite ridiculous and as nobody seems to actually 'get it' in the medical profession, it appears much worse than a broken leg or a row of stitches above the eye. Nobody can see this agony. There is nothing to show for our sleepless nights. I tried heat, ice, a special pillow, tens machine, strong knock me out painkillers (lots of them) and nights spent upright, on the sofa with odd shaped pillows....and then of course there were boxes of tissues and tears all night long. I recently had success with Bowen therapy for pain relief - try it but get a good one.
    • Mincub
      Mincub claire50742

      Posted

      Thank you for your reply. Just to realise I'm not alone and I'm in the right place has helped. Today has been another difficult day, so much so that I'm going back to my GP tomorrow to get something done. I've decided I have to find the strength from somewhere to fight this battle and that begins with me getting some boxes ticked, a scan and or X Ray,some new meds and some more info other than ....it's my age!

      thank you and my heart goes out to all of you suffering this silent disease that nobody seems to understand until they get it sad .

       

    • Je_n
      Je_n claire50742

      Posted

      Hi Claire,

      Glad you found a littl pain relief. Where did you find the person, through a reference or online?

      Boy you are right about the medical community not understanding the severity of the pain! I am an active person and I am knocked on my butt. 

    • claire50742
      claire50742 Je_n

      Posted

      He was recommended by many people, I must admit I ignored the recommendations as I put a lot of faith in the scientific, conventional type of medicene.......until I had this condition. THEN I realised that I was banging my head against a brick wall and got so desperate that I gave him a try. The relief has been amazing. 
  • frozen_stiff
    frozen_stiff Mincub

    Posted

    Hi Minicub,

    Did the shoulder pain come before or after your surgery and how much range do you have in your shoulder. If you shoulder range is limited is it pain or stiffness causing it? 

    • Mincub
      Mincub frozen_stiff

      Posted

      Hi

      i had a lot of shoulder pain after the opening as they tie your arm up while they operate so I wasnt in the best position for 6 hrs and was then told there was nerve damage. But the pain I have now and the lack of mobility including being able to reach out to pick up anything started last September. I have lymphodema and have had RA since my 20's so thought it was a combination of all of these things but the last few weeks have been hell on earth, the pain is so severe it's driving me mad and the inability to be able to just comb my hair is just so depressing.

      i have managed to secure an appt.with a rheumatologist for next week, so 

      hopefully, something might happen. I never knew pain like this existed ...pain that really does drive you insane.

      thanks for your help.M

  • Je_n
    Je_n Mincub

    Posted

    Hi Mincub,

    So sorry!  Sounds like you have been thought a lot already.  You are not being melodramatic.

    I also have severe neck pain (very painful to look down, shooting pains down my neck into shoulder/arm, numb neck, very limited range of motions). My doc said my whole body is responding to the pain in the shouler being on guard and in pain... but so far the neck issue is agravated by the the FS. They just pulled me out of physical therepy too as it was agravating my neck. Anyway. 

    I am mentioning all of this to you to let you know that this FS is causing me issues all over the place too and you are NOT alone. Hang in there.

    This sounds silly and very simple, but have you bought a heating pad that allows for "damp heat"? It's pretty much the only thing that gives me a little temporary peace and a little tiny bit of pain relief. Baths sometimes help a bit too. 

     

  • Mincub
    Mincub

    Posted

    I have an appointment lined up for Monday with a consultant rheumatologist.

    can anyone give me any information as to what I need to ask for in relation to treatment and formal diagnosis.

    should I ask for a scan or X-ray and what kind of meds are available, not just painkillers ...I'm thinking anti inflammatories. This chap by all accounts tends to think that if you're a diabetic, FS is a given and his particular choice of treatment is Steroid injections (which I am allergic to - last one in my knee resulted in anaphylactic shock). Any advice much appreciated.

    Thank  god for this haven.M

    • maria58274
      maria58274 Mincub

      Posted

      My frozen shoulder was confirmed by the consultant with an ultrasound scan - he was able to rule out joint damage, tears, bone spurs, etc.  My GP had prescribed Naproxen, which is an anti-inflammatory but it made me feel queasy and I was reluctant to take it, due to potential side effects.  I found over-the counter Ibuprofen as effective - they didn't stop the pain but took the edge off. He also prescribed Co-codamol for the pain which I only took as night, to help me feel a bit drowsy.  To be honest, none of the tablets did more than take the edge off.  I also tried cold packs (a large bag of economy frozen peas - but remember not to eat them!) and hot water bottles - both of which helped a little.  What has really helped me was the hydrodilatation, recommended by my physiotherapist.  I didn't want to go down the surgery route but this seemd a less invasive treatment - and it seems to have helped me on the road to recovery.

      I have a friend who had an allergic reaction to a cortisone injection - it turns out that it isn't the cortisone that she was allergic too, which is apparantly rare, as cortisione is a sythetic version of something naturally found in the body.  It turned out she was allergic to another component of the injection  - sometimes it is routinely mixed with local anaesthetic, for instance.

      Good luck with your consultant.  Hope you can manage to find some treatment that brings you relief.  

  • Mincub
    Mincub

    Posted

    Well I am still somewhat stunned after the appointment with a consultant rheumatologist on Monday last.

    when I went in he said I know you ...I had no memory of having met him..he then brought up my notes and said ah yes you were an inpatient last November. I wasn't. I was however an inpatient a year previous to that with Temporal Arteritis and whilst there ended up with a perforated Bowel!!!

    this hospital is one that has been in the news constantly as being in special measures, I can tell you why, but this forum isn't the place for it.

    its pretty ironic as I am a public governor for England for another NHS foundation trust, who has been rated good by CQC over the last 3 years.But back to the matter in hand, I asked about a scan .... Don't need one ! I asked about medication....take painkillers.....I asked about physio...he gave me an A4 sheet of exercises. He DID offer an injection but then after my explanation as to what happened years ago with my knees, decided against it. He then asked me if it hurt.!!!

    i said I had had a lot of pain over the years but this one had brought me to tears, I mentioned that my neck was painful, my face and ear. He said well, that might be something else.

    and then the coup de grace, I shall be writing to your GP, just keep plodding on, there's nothing I can do for you and I will see you in 6 months just to keep an eye on you.

    and that was it!

    bedside manner was more like roll on roll off and next one please!

    how can I have any faith in a consultant who doesn't even get the date of admission right!

    now I know what I'm up against, I have to find the strength to fight my own battle, though God knows how!

     

    • maria58274
      maria58274 Mincub

      Posted

      I don't believe some of these consultants!  Surely you need some sort of scan to try to get a handle on what is causing the pain.  My GP didn't even suggest a consultant - he offered physio for which there was a 3 months NHS waiting list.  I was lucky enough to have access to Bupa via my hubby's job, so got a quicker physio appointment through that - making sure I found one that knew about frozen shoulders.  It was the physio that recommended hydrodilatation and a consultant that would do it, after seeing various successfully treated patients - including his own mother!  The consultant (a shoulder and upper limb specialist) routinely does an ultrasound scan as part of the first consultation.  Frozen shoulder can be mis-diagnosed and there can be other underlying issues, so it's important to get the correct diagnosis to ensure the best line of treatment.

      From your description, it does sound possible that there is some other issue but it does need investigation.  It seems the NHS give no priority at all to people in pain.  If this consultant couldn't find the issue he surely should have referred you on to someone who coulld investigate further.  It really makes me wonder what the NHS is coming to and I share your frustration.

      Good luck and I hope you can do more than "keep plodding on".

  • Mincub
    Mincub

    Posted

    Well I saw my GP after having seen the consultant and she did a complete turnaround. More or less said the consultants word was law and when I asked about having a scan she said I'm sure if you needed a scan the consultant would have done one. I told her my ear  face and neck hurt and she looked in my ear with her torch and said that's ok,  Tell you what I'll give you some anti depressants and then you wait 2 weeks have these blood tests done because we've only just done some, then come and  see me if you're no better. I had the distinct feeling that I was being washed off.

    Im just wasting my time .....where to now?

    • Je_n
      Je_n Mincub

      Posted

      Hi Mincub,

      Why do the medical professionals treat people like their nuts? My doctor did something similar to me. I waited a week, emailed my doctor (so was in writing) and said the pain was the same. I kept politely bothering the doctor via email and visits until she referred me to a specialist.

      I'm sorry you're experiencing this. Keep at them. I did and they finally gave me a scan. Torn rotator cuff, frozen shoulder and somethings off in my neck too. All that and my doctor said I had a muscle issue! Keep in them... We are all here for u.

  • Mincub
    Mincub

    Posted

    You know you're absolutely right ...they treat us for the most part like flies that need swatting as we irritate the hell out of them!  It's so hard to make people do the job they are paid to do in the first place!

    i wouldn't mind but this is the same surgery who told me for 8 months I had arthritis in my ribs....I had a tumour in my chest. After finally digging in my heels and getting an X Ray which came back with suspicion of lung cancer, my doctor jumped out of his chair knelt by my side and said I'm sorry I'm sorry don't sue me!

    i should have.

  • Mincub
    Mincub

    Posted

    I am finally booked in for some blood tests on Wednesday and have been prescribed amytriptylline (sp)  as my GP now thinks I could have Fibromyalgia and not a frozen shoulder as in her words we haven't had a scan have We?

    Thats what I asked for inthe first place!

    The pain over the last few days hasbeenpretty much unbearable, and nothing is touching it.sad

    I'm riddled with pain and dealing with numpties...help!!!

     

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