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Adrienne Dellwo

Piling On Diagnoses with Fibromyalgia & Chronic Fatigue Syndrome

By December 6, 2012

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If you have fibromyalgia or chronic fatigue syndrome and nothing else, you're both lucky and rare. Most of us have diagnosis after diagnosis, and they just keep coming.

For the past few months, I've had a definite increase in joint pain and inflammation, especially in my shoulders, hands, knees and feet. These aren't the places that I get fibromyalgia pain, and the amount of swelling was definitely new. Lately, I've had enough inflammation to have nerve compression in my arms, and the joints have been getting hot. I knew that was something new - the heat is a dead giveaway that it's not fibromyalgia pain.

A few days ago, my rheumatologist diagnosed me with polyarthritis, which means it impacts multiple joints. In my case, she believes it's in the hips, spine, hands, feet and knees at the very least. The diagnosis itself doesn't bother me, because it's just a name for what was all ready going on in my body. However, the treatments make me nervous.

We started with steroid injections in my hips, where my pain has been worst. Fibromyalgia can cause negative reactions to steroids and that worried me, but fortunately my side effects have been very minor, while the relief to my hips had been huge.

Because polyarthritis is autoimmune, I'm also about to start a once-a-week drug called methotrexate, which is supposed to keep my immune system from attacking my joints. It can have some nasty side effects (and it seems I always get them, no matter the drug.) Also, since it suppresses the immune system, it will leave me more susceptible to every bug that goes around. With a tendency to catch everything anyway plus two kids in school, it should be interesting.

This is my second autoimmune disease, as I've had Hashimoto's autoimmune thyroiditis for a few years now. Contrary to popular belief, fibromyalgia is not believed to be autoimmune. According to research, autoimmune diseases can predispose people to fibromyalgia, but fibromyalgia doesn't raise the risk of autoimmunity. I suspect, based on my experience and the stories I hear all the time, that further research will show fibromyalgia does in fact raise the risk.

This is my 9th diagnosis of a chronic pain condition. I've also got six sleep disorders and about ten other diagnoses. This can stop any time.

So why do we so often have this cascade of problems? First, it's fairly logical when you consider that fibromyalgia and chronic fatigue syndrome both involve multiple systems in the body, including the:

  • Nervous system
  • Immune system
  • Endocrine (hormone) system
  • Cardiovascular system
  • Digestive system

Each of those systems has an impact on the entire body, down to your last cell. The healthy body is finely balanced, but when you add imbalance like we have to ... well, pretty much everything, you can't exactly count on things to run smoothly. In my case (and countless others,) minor fibromyalgia-based dysfunction in the immune system may have lead to changes that triggered first one autoimmune reaction and then another. It's like knocking over dominoes.

I've written about this before, but in case you missed it, it's worth reading this article on Dysautonomia, by my About.com colleague and Guide to Heart Disease, Rich Fogoros, M.D.

While this piling on of diagnoses makes the future look bleak, remember that we can find ways to manage our illnesses. I utilize a wide range of treatments and management strategies and manage to stay functional, in spite of my growing list. Over the past few years, I've worked with multiple doctors, physical therapists, a massage therapist and a chiropractor. I have a TENS unit, C-PAP for sleep apnea, carpal tunnel braces, TMJ splint, inversion table and massage cushion that I use regularly. I do physical therapy exercises and yoga stretches every day. I take half a dozen medications and about 20 supplements every day. Managing my health takes a lot of time, energy and money, but it has given me back my life.

Now wish me luck with the methotrexate, which I'm planning to start on Friday (Dec. 7.)

Have you had a cascade of diagnoses since you developed fibromyalgia or chronic fatigue syndrome? Have you been able to manage your illnesses? Which ones are the most difficult for you? Leave your comments below!

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Comments
December 6, 2012 at 11:14 pm
(1) bobbi says:

Most of my concurrent diagnoses came before the fibro. I already had MCS, IBS, TMJ, migraine, arthritis in my hands and neck. When I was diagnosed it was because of new to me sleep disturbances for which sleep medication did nothing to help. I’ve been diagnosed since then with RLS, nerve pain in my hands and feet (forgot the term) and sleep apnea.

December 6, 2012 at 11:52 pm
(2) Sherry says:

Hi Adrienne,
Sorry about your ‘new’ diagnosis.
You and I have a lot in common, I have FM, Rheumatoid, Psoriatic and severe Osteo Arthritis’s. I have Hashimoto’s thyroid, sleep apnea, chronic pain (my knee’s are toast and I will be in a wheel chair in the nearer future. knee replacements etc are not an option..) The pain is caused from raw bone on bone and my knee caps are wafer thin…the pain at times is unbearable and I take morphine.
I also have severe DDD C4 – C7 and Chronic Anxiety disorder… ‘Such fun!”
I take Methotrexate weekly by injection, I find the pills have more side effects than the injections… also this little tidbit saved me a lot of side effects of the MTX I take 5 mgs of FOLIC ACID a day except on needle day when I take a ‘FOLINIC ACID’ 12 HOURS after my injection. Prior to all the Folic acid I was so nauseated and had bad headaches
I currently take 23 medications and supplements plus my one Methotrexate needle a week and 2 Enbrel needles a week (I get bad psoriasis with the Psoriatic arthritis and Enbrel works well)
Last year my drug plan paid over $55,000 for my meds not counting any supplements – the exception being the Folic and Folinic Acid because they were prescription.
I’ll be asking my Dr about Dysautonomia, I am fortunate that I have a good medical team.
My worst illness by far (other than the unfix-able knee thing) is the FIBROMYALGIA, it never goes away it just changes it’s intensity and symptoms… I was diagnosed with it in 2000 and I still have trouble recognising one illness from the other…

I will be thinking good thoughts for you on Friday…. If you have bad side effects you may want to change your MTX day to a day before some ‘slow’ days (If you have any)

Good luck and I hope you let us know how you are doing on the immune suppressants.

December 7, 2012 at 12:37 am
(3) Amy says:

I read a few weeks ago, Adrienne, that you were dreading the change of your GP. I’ve been waiting with interest to hear your experience with your new doctor since I am in the same position. If you have written about it I’m afraid I have missed it.

Do I wait until there is something (extra) wrong with me and have to go along and start the whole miserable history from square one and include the new symptoms – or do I waste one of the doctor’s appointment slots by simply going along to introduce myself?

I have to admit that it is niggling at me!

Amy

Guide Response: Hi, Amy! Thanks for asking. Here’s my post-appointment update: My New-Doctor Experience. When you’re faced with going to a new doctor, you should make an introductory appointment. Some of them require it, actually. That gives you a chance to get acquainted with each other when you’re not in there for something pressing – and, if there’s a problem, it can be an early indicator that you need to find someone else before something is urgent! Best of luck to you. ~Adrienne

December 7, 2012 at 10:26 am
(4) Kris Thrasher says:

I’m so sorry to hear about your new challenges. I don’t know how you keep yourself together. You are my fibro-hero and I always look forward to your newsletter and recommend them to anyone I come across who has fibro or chronic fatigue.

Positive energy coming your way!!!!

December 7, 2012 at 3:54 pm
(5) Doreen says:

I’m sorry to hear you have a new illness to deal with. I was on methotrexate for a few months. Two things to make sure you do: one, take the injections. Less side effects all around and for people like you and I who suffer side effects from everything we take, this is important. Two, MTX depletes folic acid. A good doctor will know this and prescribe 1 MG (I believe) a day. If he/she doesn’t, please mention it. Doctors are notorious for prescribing things and not telling us about the side effects.

My diagnoses, in order: Hashimoto’s, fibromyalgia, IBS, sleep apnea, delayed sleep phase disorder, psoriasis, psoriatic arthritis, degenerative disc disease in C5, C6, & C7, gluten intolerance, anxiety, chronic fatigue syndrome. I don’t know what might be next, but I do have to see a cardiologist because I have severe heart palpitations (have had them for some time) that none of my doctors bat an eyelash at when I mention it to them. They are common with Hashi’s, menopause (yes, that too), and other conditions. However, recent research seems to show that atrial fibrillation is associated with Hashimoto’s. I need to get that ruled out in order to rest easier.

Every time I go to the doctor, it’s something else. Not too long ago my endo checked my carotid pulse and asked if I’ve ever had a carotid doppler. Instead of answering her, I burst into tears and babbled hysterically about being unable to go 6 months without something new going wrong.

I’m not the type to ask “why me?”, but it’s getting harder and harder to keep my chin up. There isn’t a day that goes by that I feel good and it’s been that way for 13 years. I don’t want to be pessimistic, but it’s hard to hold out hope that things will get better instead of worse.

Good luck with your treatment. I hope you have success with it.

December 7, 2012 at 4:28 pm
(6) Debbie says:

I have to say I have more diagnosis than I could ever want. One thing about the methotrexate, if you’re prone to side effects.

My insurance co wouldn’t cover enbrel unless I had taken something else first so my doctor put me on methotrexate, that lasted 2 weeks, then avarro??? can’t remember the name, that lasted a week and 1/2. Then finally my PCP pressured the insurance co about the enbrel.

If you have gasto illnesses at all that stuff can really do a number on you. I have severe stomach cramps, pain, bleeding, everyone at work commented how I looked so pale and sick.

The enbrel is scary as hell too but so far it is helping some.

Only thing is it doesn’t do much for OA and my knees are killing me and the steroid shots don’t work.

Can’t take anti-inflammatories cause I used the for 2o+ yrs in high doses so my kidneys have some damage not to metion the “itis” thorugh my whol digestive tract.

Good luck with themeds.

December 7, 2012 at 6:27 pm
(7) Wendy says:

I was just diagnosed this week with Colitis! It is a very depressing thing that I have had to deal with this week. But now I know at least I am not alone in this!

December 7, 2012 at 6:31 pm
(8) Brenda H says:

I guess I feel somewhat lucky compared to what I have read so far. I do have Fibro, CFS and have also been diagnosed (since 2003), chronic daily headaches, IBS, sleep apnea, bursitis, rotator cuff impingement, Carpal Tunnel in both wrists, plus it seems that I am much more susceptible to all the “colds”, “flus” etc… And to add insult to injury, I am 53 and going thru menopause. I never know what is caused by what. I will tell you that after a horrible experience with Cymbalta, I no longer take any kind of drug for my Fibro. I have started an exercise routine which has done a world of good. You just have to take it slow and listen to your body. Good luck to everyone that has these insidious diseases. They are, without question, life changing.

December 7, 2012 at 8:20 pm
(9) Mary T. says:

@Debbie – the drug you’re thinking of is Arava. I’ve been taking it for several months for ‘Inflammatory Arthritis’ and, luckily, it’s helping me – the C-RP, Sed Rate and pain are down and it has not affected my liver function. I can’t take Methotrexate due to a genetic predisposition to severe side-effects, which is why I’m on the Arava.

Most of my dual-diagnoses appeared before the day I was dx’d with FM, Polymyalgia Rheumatica and Giant Cell Arteritis (yep, all in one day!). Prior to that it was: sleep apnea, IBS, RLS, neuropathy in my feet, arthritis in the knees w/torn meniscus and knee replacement, Type 2 Diabetes, Carpal Tunnel Syndrome w/surgery, and major depression. Since then, I’ve been dx’d with CFS, torn rotator cuff in both shoulders, the carpal tunnel has returned, I have severe pain in my right hip (piriformis muscle?) and the asthma that I’ve had since I was a kid has worsened dramatically. It seems like it’s always somethin’…. It’s a good thing we’re as tough as we are! Being sick ain’t for sissies :)

December 8, 2012 at 1:26 am
(10) Andrea Farrell says:

I have been diagnosed with Parkinson’s disease, many years after the diagnosis of Fibrpmyalgia and CFS. My neurologist has no idea what to do, as it has just piled on layers of overlpping problems.

The combination makes PD harder ro live wih as, not only do I suffer the pain of FM, but diabetes type 2, gastroparesis, and severe memory loss have taken over my life.

Does anyone you know of suffer from the same problem?

December 8, 2012 at 1:38 pm
(11) JL says:

I was diagnosed with FM 17 years ago but know that I’ve had that and cfs most of my life. Other than those two things I didn’t have a lot of other issues until about 7 years ago when I stumped the drs with what appeared to be a blood disease. They tried every medicine they could find, even tried chemo. It all just made things worse. I too have bad reactions to medicines and that was when my life went downhill! They gave me a med that caused breast cancer. Then the diagnoses started adding up. Osteoarthritis. Diabetes 2. Lymphedema. RLS. Sjogrens. Most recently osteopenia which is only .3 from bring considered osteoporosis. I take over 20 meds! I don’t even know what to blame things on any more!
I started seeing a nutritionist and he has helped more than any dr!! Plus Ive lost 43 pounds in 8 weeks!!

December 8, 2012 at 2:57 pm
(12) MKaleel says:

@ anyone taking Cymbalta and has a diagnoses of Colitis or Microscopic Colitis. My Pain Management Doctor had a Neurologist review my file. He said he had seen a lot of colitis diagnoses following the beginning of treatment of Cymbalta. Once I stopped taking Cymbalta my Mircrscopic Colitis went into remission.

Another thing to note is that when I recently to a strong antibiotic (Augmenten) my colitis came out of remission. You have to be careful and mot take anything that list diarrhea as a possible side effect.

December 8, 2012 at 9:53 pm
(13) Margaret says:

I am curious to know if any of the multiple symptoms and conditions that many of you have are Lupus or SIBO. I have many of the symptoms you all share. I had never heard of psoriasis arthritis. I was recently diagnosed with psoriasis, however. It is never ending, isn’t it.

December 9, 2012 at 5:56 am
(14) jaide says:

Your story sounds just like mine. Fibro and CFS, then autoimmunes which include Hashimotos, Rheumatoid, Exertion Asthma from the Rheumatoid,and Common Variable Immunodeficiency. All this in the last 4 years. Started MTX November of 2011, and got good results. He started me on 15mg orally, but it would only last about 3-4 days, so we continued increasing the dose. Now at 25mg (too much for my stomach because of side effects), I now do injections. But, that still only lasted about 5 days. I would have 4 good days per week and 3 bad days (2 days before my injection and the day of the injection). I suffered this way for a year continuing to tell him all this. So last month he prescribed Enbrel to go along with the MTX. I have only been on it 4 week, only seen minimal improvements so far. I expected to feel it immediately like the MTX, but they say it can take up to 3 months to get the full effect. Also, on the MTX, make sure you take your folic acid. I take 400mg everyday, and the day I take my injection I take 800mg to help with the nausea, I had more nausea with the pills, but none with injection. Good Luck, so sorry to hear about this, prayers will be with you. No one understands all that we go through, your articles are such a wonderful help for me and my family. Thank you, Jaide

December 9, 2012 at 5:55 pm
(15) jay says:

I have just been diagnosed with Fibro. Ive had hashimotos thyroid since 2003, anxiety, depression, stomach problems, headaches and restless legs for as long as i can remember! I take 6 different medications every day. So yes fibro definitely seems to come with a lot more illnesses.

December 10, 2012 at 4:33 am
(16) Gail Searle says:

Hi all, I was eventually diagnosed with FM and CFS 8 yrs back but have had FM since 1982. I was 28 years old. I now have ostreo arth, peripherial Neuropathy. With PN my feet feel as though they are on fire and my ankles swell badly. I Also had to have a Pace Maker fitted as my heart rate dropped to 30 BPM at night. Also suffer from headaches and Ostreoparosis in my lower back. In the mornings I am unable to use my hands as they are so painful. I’ve also put on a lot of weight as I am not as active due to pain. My heart and prayers go out to each and everyone who is suffering. God bless. Gail

December 10, 2012 at 7:25 am
(17) Leslie says:

My first rheumy 13 years ago was convinced I had Polymyositis. Prednisone made me gain weight. Methotrexate gave me FATTY LIVER DISEASE. Changed to Imuran, & that damaged my liver further. Liver biopsy & scans showed cysts in fatty liver, stones in kidneys, & thyroid lobes so full of nodules they push my esophagus to the side, causing choking/problems swallowing so twin biopsies. (My sister had Polymyalgia Rheumatica about two years ago, took prednisone long-term, but seems to be gone now. Had her thyroid irradiated before the PMR developed.)The FM was suggested by my PCP who did the muscle biopsy & ordered the electromyography–both normal. The neurologist who did the EMG thought I had MS, & did 2 brain MRI’s—all she found was ischemia.Ten years later, I moved to another city. New Rheumy said it’s FM with all the “perks” PLUS an Atypical Connective Tissue Disease. Have had Osteoarthritis for many years in knees, hands, & cervical/lumbar spine. Had left knee replaced in 2008.Three months later, I had Rotator Cuff surgery for 3 torn muscles. Now January 4, 2013, the right knee is being replaced—-a lifetime of dislocations, torn ligaments, & torn muscles in both knees, not to mention multiple sprained ankles that required casting–sounds like connective tissue issues to me.
Put on Effexor for depression in 2005 when I couldn’t get out of bed/cried constantly. In 2006, my Diabetic son died, & several months later I left my marriage of 31 years. The Effexor stopped working in 2009, after I moved to a big city, so my new primary started me on Paxil & stopped the other, & put me on Reglan, Pepcid, & Aciphex for a hiatal hernia with chronic nausea since 2000, + Ativan, because I was jumping out of my skin, & when I told her in 2010 the depression was getting worse again, she added Welbutrin. Yeah, I’m in great shape. But MAKE SURE YOUR DOCTOR DOES FREQUENT LABS FOR LIVER DAMAGE!

December 10, 2012 at 9:25 am
(18) jackie says:

I am sorry for everyone of us. My sub-illnesses are too long to type. FM is not for the weak minded. The battle is grueling, but, must be fought. Prayers for all. Right now I am doing Myofascial Release therapy which seems to help with movement and pain. Also on tons of meds. & supplements. All my best, cheers.

December 14, 2012 at 9:41 pm
(19) Matt says:

Fibromyalgia was my first diagnosis years ago. Right after that came CFS then sleep apnea. Following these over the years came arthritis, RLS, degenerative disc disease, IBS, ulcerative colitis, lupus. Also following that diagnosis came surgeries. I had my neck fused, 2 failed rotator cuffs, arthroscopic knees surgery and even surgery having toes fused. Obviously there’s a correlation with all the conditions and surgeries following my initial diagnosis of fibro. I’m still in my 40′s.

February 27, 2013 at 1:31 pm
(20) Andrea says:

Not one person mentioned the possibility of a virus causing ME, CFS, IBS, Fibromyalgia…etc. It is possible that many of you have a chronic ENTEROVIRUS infection. All these diseases you list are syndromes, with no known causes. The family of enteroviruses contain more than 70 strains, all producing various symptoms. If you want to learn how to rule it out…..go to Stanford Medical School website and search enteroviruses and/or coxsackieviruses. There is a step by step process for your doctors to rule it out… I would bet my life savings that most of you do in fact have a chronic enterovirus infection. I have 3 echoviruses, and a coxsackie B virus. I have also received diagnoses for CFS, Fibromyalgia, Crohns, IBS, pericarditis (heart palpitations), among other disorders. Good luck and do whatever it takes to rule out an EV infection. Knowing the cause helps everything!!!

April 16, 2013 at 1:31 am
(21) Melissa says:

I am new to all of this, however, the pain has been there for years. Worsening over the last 4 years or so. I have had so many different things happening to me and they can’t find anything through MRI’s, but I am getting pissed off and discouraged at the same time. I have, Anxiety, sleep loss, TMJ, IBS, Osteopenia, Fibromyalgia, Chostocondritis and Psoriasis (ptrobably something else I have forgotten). My regular doctor wasn’t there the other day and the “guest dr” told me to see a dermatologist and Rheumatologist (I must say the my regular dr would have probably just changed my pain meds and sent me on my way – not really happy with him). He (guest dr) thinks I have psoriatic arthritis…which he says all of my conditions contribute to. I just want answers!!! Sick of missing work due to pain – and with no answers I get in trouble for calling in sick (not really “sick” but in pain and can’t move). I can’t even get comfortable to go to sleep in my bed or my spare bedroom bed, so I end up in a chair in the living room sitting up not to put pressure one my ribs or sides. I HATE THIS!!! Anyone else run into this???

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