Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Recently diagnosed

Discussion in 'Pain and Inflammation' started by chloe1988, Jan 19, 2017.

  1. chloe1988

    chloe1988

    Messages:
    4
    Likes:
    17
    Hi everyone, I've recently been diagnosed with ME Was just wanting some advice on how people cope on a daily basis? How they treat the muscle and joint pains?

    I have two children, one 6 years and one 11 months. I also work part time as a senior support worker for adults with learning disabilities. I'm finding things especially work very hard to keep up. Especially the mornings when I wake up feeling like I can't get out of bed with the feeling of pure exhaustion and that horrible hungover feeling.

    Also does anyone find doctors are so unsupportive towards ME/CFS.

    What are people's thoughts and advice?
     
  2. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,541
    Likes:
    19,637
    Germany
    justy, AndyPR, Jennifer J and 3 others like this.
  3. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,162
    Likes:
    15,094
    I've attached some basic information from the MEA (UK patient information and support charity) on both pain management and on joint pain which you should find helpful

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    1 RE JOINT PAIN

    Although joint pain/discomfort can form part of ME/CFS, consideration should always be given to the fact that this could be due to a rheumatic disease that also causes fatigue (as many can - including lupus/SLE, Sjogren's Syndrome and rheumatoid arthritis), or the presence of a fibromyalgic component to ME/CFS.

    Joint pain can also be caused by hypermobility syndromes, which are more common in people with ME/CFS, and should always be considered in younger people with joint pain - especially if there are other symptoms suggestive of hypermobility syndromes such as very flexible joints, joint dislocation, digestive problems, dizziness or fainting episodes, thin or stretchy skin with easy bruising

    More info on hypermobility syndromes:http://www.nhs.uk/conditions/joint-hypermobility/Pages/Introduction.aspx

    The clinical assessment of people with ME/CFS who also have joint pain, along with relevant investigations, is covered in some detail in the MEA purple book:

    http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/

    Joint pain in ME/CFS is NOT accompanied by swelling, redness or deformity - so if any of these 'red flag' symptoms or signs are present this indicates another explanation that requires proper clinical assessment and investigation by your doctor

    2 RE PAIN MANAGEMENT IN ME/CFS:

    Most people with ME/CFS have pain

    This can vary in both nature and intensity

    Pain can occur in ME/CFS in the muscles (= myalgia), joints (=arthralgia) and nerves.

    The latter type of pain is called neuropathic pain. It often has a shooting, burning or stabbing quality and may keep a person awake at night. Neuropathic pain can also be associated with sensory disturbances - such as tingling or numbness, especially in the arms and/or legs.

    We have an MEA information leaflet that covers all aspects of pain management - including non drug approaches such as acupuncture and TENS machines:

    http://www.meassociation.org.uk/shop/management-leaflets/coping-with-pain/

    We also have MEA information leaflets covering the different prescription only drugs that people can find helpful for neuropathic pain relief in ME/CFS:

    Amitriptyline:
    http://www.meassociation.org.uk/shop/management-leaflets/amitriptyline/
    Duloxetine/Cymbalta:
    http://www.meassociation.org.uk/201...-for-some-patients-with-mecfs-27-august-2015/
    Gabapentin/Neurontin:
    http://www.meassociation.org.uk/shop/management-leaflets/gabapentin-pain/
    Pregabalin/Lyrica:
    http://www.meassociation.org.uk/shop/management-leaflets/lyricapregabalin-for-pain-relief/

    The section on Pain Management in the MEA Management Report (pages 14 to 16) contains a great deal of patient evidence on what people with ME/CFS find helpful and not helpful when it comes to pain relief

    This report can be downloaded from the MEA website:
    http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf

    How to get NHS help for pain:
    http://www.nhs.uk/Livewell/Pain/Pages/Longtermpain.aspx

    Similar information can be found in the Treatment section of the MEA purple book, which can be sent to your GP:
    http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/

    There is a useful NICE guideline on neuropathic pain:
    https://www.nice.org.uk/guidance/cg173/informationforpublic

    Ends
     
    Countrygirl, Comet, AndyPR and 5 others like this.
  4. slysaint

    slysaint Senior Member

    Messages:
    2,009
    Likes:
    10,397
    W. Sussex UK
    sadly yes. And not to frighten you but if you are in the UK, it might be about to get worse.
    But it's good that you have found PR. 'We' don't have all the answers but there will always be someone who may be able to help or point you in the right direction.
     
  5. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,086
    Likes:
    3,553
    Bristol
    @chloe1988 salt/electrolytes and water can help the hangover feeling (if you don't have high blood pressure).

    It won't cure you but many people see improvement by tweaking diet and supplements. Eg try out eating more protein less carbs and see how you feel.

    Prioritise rest

    Don't despair when you hear how long people have been ill. The ones who improved/recovered aren't on ME forums. I've known people recover in about a year.
     
    Cohen2, justy, AndyPR and 2 others like this.
  6. erin

    erin Senior Member

    Messages:
    677
    Likes:
    1,654
    Hello chloe88, most ME sufferers symptoms have similarities but they all suffer differently and to different levels. I myself suffer less from pain but terribly dizzy, have vertigo. I am terrible in the mornings as well. One thing is sure that resting is very important. You seem to have a very hectic and busy life. Please take care of yourself and spare time for your own needs. I came across very understanding and supportive however most don't know much really know about ME.
     
    AndyPR and Jennifer J like this.
  7. chloe1988

    chloe1988

    Messages:
    4
    Likes:
    17
    Thank you everyone for your response! Really helpful!
    Having a bad day today, woken up with my glands all up, very sore joints and muscles. Does anyone else loose mobility in their hands and arms, I find it hard to lift things and hold things in my hands. I've taken some multi-vitamins this morning and painkillers. The doctor gave me zapain (co-codamol) I find these make me very drowsy, however help with the pain. Would anyone reccommend another pain relief? Also how to do people manage a work balance, I've been struggling lately. Luckily I have a very supportive and understanding manager who helps me as and when I need it. Sorry for lots of questions
     
    AndyPR likes this.
  8. Kati

    Kati Patient in training

    Messages:
    5,424
    Likes:
    19,311
    Hi @chloe1988 welcome to the forums. Sorry you had to be diagnosed with this disease. it would be great if you could describe your disease onset. You need to know that many are misdiagnosed with ME when in fact something else is going on. You should have the proper test to rule out other disease. In particular, your joint pain and stiffness in the morning is suspicious for rheumatologic- like disease and it should be ruled out. Difficulty lifting and holding is not usually part of the original symptomatology, while tender lymph nodes is, but is also so general.

    I am not sure which country you are from, but it may be helpful for you to seek out a second opinion with proper assessement of your hands.

    Sending best wishes. i hope you have a supportive partner to help you out with the children.
     
    TrixieStix, justy, AndyPR and 2 others like this.
  9. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,086
    Likes:
    3,553
    Bristol
    @chloe1988
    I agree that although this could be part of ME it also sounds rheumatic. When you say you have trouble lifting things is this because of weakness, stiffness, coordination or pain?

    This was something I was just writing to someone else who is recently diagnosed:

    I think what you can do to maximise your chances of quicker improvement
    • Prioritise proper waking rest and improving sleep
    • Learn to pace well in a non rigid way, including cognitive tasks
    • Try out pacing using your heart rate see https://www.facebook.com/groups/ME.CFS.HRM/
    • Stand briefly but often to avoid orthostatic intolerance getting worse (if poss)
    • (If well enough) keep a detailed diary for a couple of weeks including food and symptoms eg http://www.mendus.org/diet-study will give you statistical analysis on associations between nutrition and your symptoms (this requires cognitive energy, if I was doing it again I'd get used to the food recording before starting to record symptoms too or get someone who eats with me to record food)
    • The ME-CFS Assistant app is also useful for recording symptoms, activity, supplements and it has graphs showing changes
    It is possible to observe patterns and tweak things with supplements. This won't be a cure in itself. One way of thinking of it is trying to remove all the impediments to healing, to allow the body the best chance to right itself while we wait for proper treatment, there's a good Florence Nightingale quote about that I can't remember. Eg you won't cure ME by cutting out gluten but some people find it hard to digest and that aggravates symptoms.

    Check you don't have other things too that are more treatable (POTS, hypotension, depression, myasthenia gravis)
    There are conditions like this which are more likely if you have ME and can make ME worse.
     
    justy and AndyPR like this.
  10. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,162
    Likes:
    15,094
    Chloe - If you could let us know which country you live in this would help in directing you towards the best sources of medical help….
     
    Kati likes this.
  11. chloe1988

    chloe1988

    Messages:
    4
    Likes:
    17
    Hi all, again thanks for your response! I'm from England, Kent. I've had many tests, from blood tests, 24 heart monitor, echocardiogram. I've had depression for years so know what that is about. After months of continues doctors appointment, treatments, medication, specialists, CBT. I wrote a diary for 6 months of my day to day symptoms, there severity from 1-10, how long it lasted for, what helped/didn't help. I showed this to the ME specialists, this is how they came with my diagnosis. With my arm and hand weakness I think this is due to pain, muscles taking a while to wake up. As it's only bad in the morning but gets better once awake and moving. I struggle to get out of bed most mornings with either swollen glands, flu like symptoms, evening feels like I've been in a night out on the town but haven't. I go to bed early to try and get as much sleep as I can but this never works, sometimes I wake up feeling like I've not been to sleep at all. Muscle and joint pain, is dreadful, the pain is indescribable. The fatigue is debilitating, which is effecting my social and work life. Having children as well, I feel like I can't do as much as I should making me frustrated. Luckily I have a very supportive husband and work collegues. I also experience dry mouth, which does not go away with drinking water, leaving me with sores over my tongue. I use to exercise 4x a week but not able to now as find it takes me days sometimes a week to recover. I get horrible headaches as well, which can make my eye sight go blurred. The list goes on and on. X
     
    Cohen2, justy and TiredSam like this.
  12. Kati

    Kati Patient in training

    Messages:
    5,424
    Likes:
    19,311

    Hi @chloe1988 thank you for providing context. i am so very sorry.

    With ME, regardless of what doctors tell you it is best not to exercise at all, since it contributes to the pathology that is at the center of the disease, post exertional 'malaise'. You must avoid exertion.

    We have a couple of doctors here in the forums, I would like to bring the dry mouth with sores over your tongue to the attention of @Jonathan Edwards who is a rheumatologist, now retired.

    What strikes me most with your story is how much you are struggling physically. I can't imagine being sick, working a demanding job and have 2 young children on top of everything. i am so very sorry. WIth you being in the UK, I am sure by now you have been told to continue working, to exercise and to correct maladaptive coping mechanisms.
    Consider that what they, most physicians in the UK tell you about ME may not be totally accurate.

    Sending best wishes, and once more, welcome to the forums.
     
    Paralee, ScottTriGuy, justy and 2 others like this.
  13. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,162
    Likes:
    15,094
    If you are struggling with employment you might find it helpful to obtain a copy of our new MEA booklet that covers all aspects, including legal ones and the way that ME/CFS is covered by both the Disability Discrimnination Act and the 2010 Equality Act, of employment and occupational health in ME/CFS

    MEA booklet on employment:
    http://www.meassociation.org.uk/shop/management-leaflets/employment-advice/

    If you are a member of the MEA we have a solicitor who is willing to provide some preliminary legal advice at no charge

    From the section on Employment and the Law

    8 EMPLOYMENT AND THE LAW


    8.1 The (1995) Disability Discrimination Act (DDA)


    The DDA was brought in to provide disabled people with legal rights relating to a number of important areas, including employment. Several people with ME/CFS have made use of this legislation and helped to establish that the DDA could apply to people with ME/CFS. The first case involved O’Neill vs Symm and Company Limited – where Dr Shepherd provided expert medical opinion. Details can be found by entering the case names on google.


    In relation to employment, the various parts of the DDA meant that employers had to make reasonable adjustments to employment conditions to accommodate the needs of a disabled employee.


    8.2 The (2010) Equalities Act (EA) is an important piece of legislation that combines, stengthens and replaces previous discrimination legislation, including the 1995 DDA.


    A person is disabled under the act if he or she has a physical or mental impairment (ME/CFS can be classed as physical or mental) which has a substantial (where the focus should be on what the person cannot do) and long term (i.e having lasted, or likely to last for 12 months or more) adverse effect on his or her ability to carry out normal day to day activities.


    ME/CFS is listed in section A6 as a specific condition covered by the Equality Act but each case will depend on the particular facts involved in the case. There is, in fact, no need for a person to establish a medically diagnosed cause for their impairment. What is important is the effect of the impairment – not the precise cause.


    In relation to employment, this means that employers have to make reasonable adjustments (which will depend on the size of the employer, disruption, cost involved etc) to employment conditions to accommodate the needs of a disabled employee.


    A good employer should be willing to make any necessary and reasonable adjustments.


    A bad employer may not be willing to recognise ME/CFS and make any adjustments. This may then lead to a situation where dismissal is threatened due to incapacity to do the job – in which case, in legal terms, this may be regarded as unfair dismissal or constructive dismissal (if someone leaves voluntarily). See next section for more information. If you find yourself in this situation you must take urgent and professional legal advice.


    Reasonable adjustments and modifications to the working environment could include any of the following:


    ◦adjusting equipment, e.g installing speech browser software onto a computer

    ◦providing a reader

    ◦providing supervision, e.g a mentor or support worker

    ◦modifying equipment, e.g a specifically designed chair

    ◦modifying reference manuals, e.g providing oral instructions as an alternative to written instructions

    ◦altering working hours to give a later or early start or longer lunch break

    ◦allocating duties to another member of staff

    ◦transferring a disabled member of staff to fill an existing vacancy, e.g a sales representative who has to give up driving could be transferred to an office-based vacancy

    ◦assigning a different place of work, e.g allowing home working during a period of rehabilitation

    ◦allowing time off for rehabilitation or medical treatment

    ◦adjusting premises or equipment, e.g the direction a door opens to allow for a wheelchair user


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    justy, Cohen2, erin and 2 others like this.
  14. Kati

    Kati Patient in training

    Messages:
    5,424
    Likes:
    19,311
    Thank you for taking the time to write this @charles shepherd, it's most important information for new patients.
     
    justy likes this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    5,019
    Likes:
    29,097
    Hi @chloe1988
    If you have a dry mouth you clearly need to be checked for Sicca (Sjogren's) syndrome, which is often associated with all the symptoms you describe. Having problems with arm pains and muscles or nerves not working first thing in the morning is actually a common enough thing to happen from time to time in anybody but is also the sort of problem that is very likely to appear if you are unwell for some other reason. It probably does not represent any specific feature of ME or any other disease but part of the problem of being dragged down by an illness is that all these other things get amplified. In primary Sjogren's syndrome there are actually specific reasons why symptoms like this occur, though.
     
    Paralee, Valentijn, TiredSam and 2 others like this.
  16. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,162
    Likes:
    15,094
    Sjogren's Syndrome: From the Differential Diagnosis of ME/CFS section of the MEA purple book:

    Sjögren’s syndrome:

    A number of viruses, including Epstein-Barr virus and endogenous retroviruses, have been implicated in the causation of Sjögren’s syndrome. They have also been implicated in the possible causation of an upregulated cytokine profile that can occur in Sjögren’s Syndrome.

    The commonest presenting features of Sjögren’s Syndrome are dry eyes (causing a gritty sensation) and a dry mouth. A Schirmer test assesses ocular dryness.

    Vaginal dryness (causing painful intercourse) and respiratory tract dryness (causing a dry cough) may also be present.

    Debilitating fatigue and/or arthralgia is present in a significant proportion of cases.

    Anti-Ro and/or anti-La antibodies are found in approximately 75% of Sjögren’s syndrome patients.

    Hypergammaglobulinaemia with raised immunoglobulin G (IgG) and/or IgM is quite common.
     
    Paralee and Kati like this.
  17. chloe1988

    chloe1988

    Messages:
    4
    Likes:
    17
    Thanks again all for your response. I am going to ask my doctor about Sjögren's syndrome and see what they suggest. In the U.K. Unfortunately there is very little understanding of what ME is, which can be very frustrating. It can be a very lonely place!

    I had to leave work early again today due to not being able to physically continue on. The fatigue today was a real struggle, I work with young adults with learning disabilities who are very energetic. I find it hard to keep up! I feel like I'm a 28 year old women in a 80 year olds body, when the fatigue, muscles aches and pains, brain fog kicks in. After nearly a year of research, as I say many health tests, doctors and hospital visits. I think it's safe to say I've got ME, it's been mentioned by 3 different doctors now.

    Going to go back to the doctors for a review on my pain relief as they seem to not work. Makes my fatigue a lot worse. What pain relief are other people on. Your advice is greatly appreciated
     
    Cohen2 likes this.
  18. Paralee

    Paralee Senior Member

    Messages:
    492
    Likes:
    535
    USA
    @chloe1988 , just to add to the confusion, can I just throw out a couple or three things? Doctors don't really know it when they see it a lot of the time because your can have normal calcium and that's what usually tips them off, it's hyperparathyroidism. Getting your serum calcium and pth done can usually rule it out.

    Another one is a fluoroquinolone (sp?) antibiotic reaction. The third is a B6 toxicity. Maybe a fourth is low cortisol, but that's probably stretching it. I'm just bringing them up because I've had (still have 2) of these and at times my mouth would just go dry. I don't know why, and maybe yours is so dry that the Sjogren's is a better bet.

    I just believe in "knowledge is power", well......it's supposed to be. I'm just throwing possibilities out there.

    Good luck.
     

See more popular forum discussions.

Share This Page