Newbie says THANKS

Discussion in 'Fibromyalgia Main Forum' started by yorkoak, Mar 6, 2003.

  1. yorkoak

    yorkoak New Member

    I have changed the title of my first message to thank people for their support and advice, especially Catgal who took the time to speak at length.

    I am a 34 year old mum of two lovely girls and I live in a small village in North England.

    I have been diagnosed with Allergic Rhinitus, Asthma and Ecxema but I manage all these to the extent that most people don't know I suffer.

    I have had blood tests, x-rays, physical examinations for every rheumatoid ailment, chest complaint and nerve test and everything has come up normal.

    So my doctor said that he would send me to a Pain Clinic to look at managing my pain and he said,

    "You can call it Fibromyalgia as that's just joint ache!"

    Perhaps that is good enough to get help.

    My problems began with my first pregnancy (here I was told that the pain was normal) then during my second pregnancy I was diagnosed with Carpal Tunnel Syndrome and Pubis Dysfunction. Although I received Physio I was not taken seriously and told all symptoms would disappear after I gave birth. Since my baby was born on 25th Dec 2001 the pains have moved into other areas of my body.

    1. My hands and feet are sensitive to cold to the point where to touch something cold is excruciating.
    2. To sit still for any length of time causes pain in my bottom and my lower back that stops me moving when I try to stand.
    3. My groin pain is like sharp knives being driven into me and is major before and during my period and when I stand.
    4. I wake with my hands clenched and my neck stiff. I feel as though I haven't slept well yet I have slept several hours.
    5. My thumbs don't grip properly and my knees buckle. I have restless or twitching limbs.
    6. I'm tired, depressed and frustrated.
    7. I have a constant chest pain in my right side which is excruciating when I sit down and relax!

    I have seen a rheumatologist, physiotherapists, a gynaecologist and numerous doctors.

    After 5 years the best they can say is that I need some "pain management" but I have nothing specific.

    I guess I'm just saying "Hello" and does any of the above sound familiar?
    [This Message was Edited on 03/07/2003]
  2. Shirl

    Shirl New Member

    Hi, welcome to the board. I am so sorry you are so ill and can't find a doctor to listen to you. Have you tried the 'Doctor Referral' link on the top of this page? I hope there is one in your area.

    You could also list here what state you are in, maybe one of our members could share their doctors name with you.

    You have so many different symptoms that you really need a good doctor to help you that is experienced with FM/CFS etc.

    I hope you get some help soon, and very glad you found our board. Please let us know how you are doing, and what they have found that is causing all your problems.

    Shalom, Shirl

  3. yorkoak

    yorkoak New Member

    Many thanks for the welcome and support.

    I've found this the best site which is why I decided to join the board.

    I live in England. I am continuing to struggle with the NHS and our endless waiting lists. I do have a fantastic Health Visitor.

    I've had all possible examinations including thyroids and as they have not found anything they have simply said that they will treat my pain. So I am to attend a Pain Clinic ... well when my appointment comes through. We'll see what that brings.

    Thanks again.

  4. catgal

    catgal New Member

    Hello yorkoak~~so glad you decided to post and join us. Many of your symptoms sound like FM/CFS, however, most of us also have additional ailments that are not related to FM/CFS. So, when you find a good physician take each ailment one by one so you can identify, diagnose, and treat any other separate problems.

    For instance, I am 53 was born with severe asthma/allergies and IBS. At the age of 15 I came down with FM/CFS. All the aching, pain, and exhaustion from these illness took a major toll on me through the years--especially since I could not get a doctor to help me with the FM/CFS.

    As I grew older osteo/psoriatic/rheumatoid arthritis set in, but I was so used to aching and hurting and feeling miserable all over that I chalked it all up to the FM. It all hurt the same.

    Found out some years later that I had three different kinds of arthritis, and this part of the pain could have been treated with anti-inflamatories years before. Could have saved myself some additional pain and misery.

    So then as time passed, and I got older, and my aches and pains and exhaustion grew more intense, I figured it was just age and the FM/CFS, arthritis(s), asthma, allergies, IBS. Until one morning two years ago I could not get out of bed. My back felt like an explosion and no longer had the ability to carry my body.

    After some x-rays and MRI's, I was diagnosed with advanced degenerative disc disease {ddd} with multiple back problems and nerve damage caused by the ddd. This could have been caught earlier; my suffering could have ended because I was put on narcotic pain management which relieved ALL
    my aches & pains, and the nerve damage might have been avoided.

    It was just that since I was 15 I was so used to aching all over, living in pain, being constantly beaten down with exhaustion and all the other symptoms that can accompany FM/CFS that I thought every ache & pain or malady was FM/CFS related. I was wrong.

    So, even if you get an official diagnosis of FM and or FM/CFS, please give each ailment you've mentioned above its own merit and have it checked out separately. Different illnesses require different medical therapies and medications.

    The anti-inflamatories I took did nothing to help my FM/CFS, but worked wonders on my arthritis. The narcotic pain relievers have been a Godsend to my ddd, additional back problems, arthritis, and FM, but do nothing for my CFS, asthma, allergies, or IBS. My asthma & allergy medications don't do anything for anything except my asthma & allergies.

    At 53...I'm a walking pharmacy. But, "Thank God" I'm walking!

    You have many ailments. Some are classic of FM/CFS. But some are also like my ddd and arthritis. And some ailments may be due to being so "tired, depressed, and frustrated". I've been a therapist for almost 30 years, and I know how powerful stress and depression can be. It can do unbelieveable things to our minds, hearts, and bodies.

    Whatever you have to do to find a good health provider--do it. Do it NOW. If you are not satisfied with the service you're getting from any provider--drop him and find another. WE are the Customer; WE pay them. And you won't get a refund for bad service. I've worked in a hospital for decades, and one of the very best ways to find a good doctor is by asking around....word of mouth. A good doctor will treat you within his areas of expertise and refer you out to other good doctors for specialized problems. My primary physician is an M.D., but he refers me out to an orthopedist for my back; to a rheumatologist for my arthritis and FM, and to a Respiratory/Asthma Specialist for my asthma/allergies. However, my primary physician is the hub or anchor of my health care. Everything goes through him. All reports from other referred providers go directly to him, and thus all my medical information is contained in one file. This also makes it much easier if you ever decide to file for disability.

    And, if you don't have one already, I would highly recommend you find a good, likeable, compassionate therapist. A good therapist can offer you tremendous support; work through stressors and help with the depression; make referrals; advocate for you; help identify and resolve emotional issues, and be a great asset if you should ever decide to try for disability.

    The biggest complaint I hear from the doctors I work with is they say that their patients try and turn a 15 minute medical consultation into an hour long therapy session, and they don't have the time or inclination to do it.

    I hope you get help soon with your medical problems. We all know what it is to suffer needlessly, to feel isolated by our illnesses, to be made to feel crazy by insensitive providers because we have an "invisible disease" that does not show up on tests or x-rays, to feel depressed, discouraged, frustrated, angry, and to grieve for the loss of the person we used to be.

    That is why hundreds of us have come together on this wonderful, supportive Board. We are here for each other; support one another; receive understanding, genuine concern and compassion from each other, and here we can cry; scream; ventilate; rage; encourage; praise; laugh; share information, experience, education, and know that whatever stage or mood we are passing through--that we are understood.

    I hope we will hear from you often; feel free to ask any questions, reply to any posts, jump in and join the family, and let us know how you are doing with your doctor search. Take care yorkoak, and know we're here for you. Carol....